The Voyage

Disability, Caring and Rights

noreply@blogger.com (Sharon McDaid) — Sat, 19 Nov 2016 12:56:00 +0000

I read this article earlier and it and the response to it on twitter has greatly disturbed me.
*Content warning for the article- parent literally calling her disabled adult daughter "damaged goods" and discussion of adult woman's personal care needs.*

I am saddened and angry at how this story has been framed. There are multiple human rights abuses described in the article. The article itself adds a new breach of Siobhan's rights- the right to privacy by discussing her intimate personal care needs in public. I am frankly disgusted by how her mother describes her:

“Sorry. I’m going to be very straight about it: she’s not special. She’s damaged goods. I wanted the child that I thought I was going to have. The one that was going to have two children by now, and have finished university studies, and be having a life for herself, in a home where I could visit and babysit my grandchildren. I wanted to have that child.”

That's not how being a parent works. You bring a child into the world and you do your best for them but you can't plan a life for them that fits around your fantasy.

On Twitter this is being heralded as brave honesty- that finally a parent is breaking the taboo of how hard caring is. That's bullshit. There's an article every day about how hard it is to parent disabled children. There's no end of parents sharing their innermost thoughts about the child they wished they'd had instead of the damaged one they got. Seriously type "care disabled son or daughter" into Google or Twitter to see how mainstream and non-taboo this narrative is.

There are stories each year of parents who go so far as to murder their disabled offspring (both adults and children) and every single time, there is a flurry of voices talking of how caring and loving the murderous parent is and how they ended life out of love and mercy. Anyone who objects to this despicable narrative is asked to "walk a mile in the killer's shoes" as though those asking that people don't murder disabled people are the cruel ones. In the light of this common narrative, I think Rosita Boland who wrote this article and the Irish Times which published it has to think again about the way they framed this story and their duty to Siobhan herself.

I am even more disgusted by the callous dereliction of duty by the Irish state. There appear to be no moves to investigate what Siobhan wants or what is in her best interests. She needs access to an independent disability advocate trained in non-instructed advocacy as soon as possible to work out what she is entitled to and how to achieve it. Her parents are being dumped on by a system that has abandoned people with high support needs, treating them as second class citizens. If Siobhan's human rights are respected, her parents will benefit.

So much for a country in which those in power seek praise for their so-called pro-life laws.

Thoughts on A World Without Down’s Syndrome?

noreply@blogger.com (Sharon McDaid) — Thu, 06 Oct 2016 16:57:00 +0000

We watched the documentary prenatal screening and the reduction in people being born with Down Syndrome (DS) presented by Sally Phillips.
Below is a short clip.

The best article on this that I have read is by Francis Ryan in the Guardian.
I have however some points that I want to make about the programme. I tweeted these this morning and am bringing those thoughts together now.

First principle is that individual women must have full bodily autonomy. Nothing in #worldwithoutdowns negates the need to legalise safe, free abortion in Ireland/elsewhere. It is still essential that Irish people #repealthe8th and that women in the north are also afforded rights over their own bodies.

It's good that a programme like A World Without Down’s Syndrome? was created and screened. It's right to raise these questions and challenge assumptions about the value of disabled lives.

Sally Phillips was open about her bias as the mother of a child with DS. The scientists, however, were at pains to dissociate their work from any consideration of ethics. Lyn Chitty who developed non-invasive prenatal test was out of line when she said to Sally "Well your son is likely to outlive you," as though that was a bad thing. Children tend to outlive parents, that's a good thing. I want my 3 kids to live at least as long after my death as I lived before their births. And the Californian dude who sequenced his unborn son's DNA said, science just tells you what you can do. Morality is something else.

Geneticist George Church in Harvard asserted, "It's all about education. It's not the technology that's the problem. It's the societal pressures and the market forces that are at work." He said it's the job of parents to change society's perception of the value of disabled people. As usual, the work of disabled self-advocates who should be at the centre of this is ignored.

Society doesn't value and accommodate disabled people. The rhetoric around disability is deficit and bigotry laden. Politicians and the media depict disabled people as scroungers who burden our education, health and social care services. In this climate, it is no wonder many people opt for prenatal tests.

However prenatal testing puts pressure on mothers to reject a specific child which is different from women who do not want to be pregnant at all. Fatal foetal abnormality is different again- it is appalling that pro-forced birth folk conflate FFA and disability. Little angers me more.

The show attempted to highlight the humanity of people with Down Syndrome. It partially succeeded. It emphasised, as usual, the benefits that they bring to others, how loving and "predisposed to happiness" they are and how they make families better. I dispute this; those with DS are as variable in their personalities and temperaments as all of us. They have innate value. They don't need to be cute or clever or exceptional.

I disliked the section with the woman crying on stage about the way midwives told of the diagnosis. The show centred the experiences of mothers of kids with DS. I disliked the way Sally hugged the woman with DS in Iceland and called her a lovely girl. That was infantilising

It was just wrong to interview a woman who'd had an abortion and have her explain her choices on camera. This issue is about society's values, not individual choices.

I've read complaints that only "high functioning" (yuk) people with DS were shown. Rubbish. There's more than enough out there about how hard it is to raise disabled kids. I'm happy to see people with DS, old and young, just getting on with life for once. It's irrelevant whether people with DS or other disabilities have special talents that benefit society. If everyone had to prove their usefulness to society to be allowed to exist, the world's population would take a big drop.

I worry that the information given to women following screening belittles the value of disabled lives, and inordinately emphasises difficulties they face. It's not as though all non-disabled people enjoy a charmed, perfect, blissful existence.

Is there a test to see if the child you're pregnant with will grow up to be an abuser, thug, manipulator, murderer or Tory? Is DS so much more deserving of eradication than all these?

The problem is that women are getting the message that they would be irresponsible to choose to give birth to a child they know to be disabled. These children are seen as 'drains on society' leading 'empty and pain-filled lives'. They are said to 'cost the state too much to care for them'.

The rhetoric that disabled people are drains on society leading empty and pain-filled lives is eugenics and anti-feminist.

Why She Left

noreply@blogger.com (Sharon McDaid) — Sun, 21 Feb 2016 22:11:00 +0000

A couple of years ago I wrote a post explaining why someone like Nigella Lawson, smart, beautiful and successful, might stay with a man who is abusive.

Today, based on that list, I will share some of the reasons why someone might opt to end a relationship with an abuser:

She's concerned about the impact living in such a poisonous environment is having on her children.
She's seen her children fall victim to some of the tactics used on her.
She knows now what this is- she's had support from people and professionals who've helped her to identify the mind games and manipulation.
She has the support of those who have known and cared for her all her life.
She knows that she deserves a better life.
She's almost 40 and the thought of waking up at 45 still living like this turns her stomach.
She's still afraid, but has clarity of thought, is still guilty about her children but is free from obligation to a grown adult.
She's liberated from focussing on his concerns, needs, complaints, wants. She's giving nothing more.
She has had enough of the incidents, explosions, hurts and humiliations.
She started to keep track of what was happening.
The emotional bond she once had to him has broken. That last link finally snapped.
She welcomes change, knows things will be hard but will improve with time.
She would rather be alone than with the wrong person.
She's immune to the apologies, promises that he loves her, that he'll change and do whatever it takes to make things OK.
The false hope has finally died.
She retains her values and principles and knows that she couldn't have fought any harder to make it work.
She wants to enjoy life.

It can be difficult when you're enmeshed to find clarity and make concrete plans. For anyone who is lost in a fog of fear, guilt and anxiety- get help from a domestic abuse organisation. They will help you to make plans and stay as safe as possible.

A Post to Guardian Dad For Autistic Kid

noreply@blogger.com (Sharon McDaid) — Sun, 17 May 2015 09:31:00 +0000

Content warning- disablism.

Yesterday the Guardian published a letter from a man to his autistic son entitled, A letter to … my son, who has autism, for whom I’ll always do my best. Read this at your peril as it is truly vile.

With just a few deviations, this letter follows the tried and tested Assembly Manual for Autism Articles ^TM which I created in 2008.

Guardian Dad starts off describing Autistic Kid's arrival into the world, how he felt "total, unconditional love" and envisaged watching Autistic Kid "grow up, go to university, find love, then maybe settle down and have his own family." The thought that Autistic Kid might not want to follow such a path doesn't seem to have occurred to him.

He then weirdly complains about his own parents' choice to leave Autistic Kid "half of everything" in their wills. Is this because Guardian Dad wanted it all for himself?

Then, following stage 4 of the autism article template, "the parents realise the child is somehow different, something is not quite right" Guardian Dad describes how Autistic Kid "didn't play very well [...] flitting from toy to toy, with no concern for the people around you and ignoring any child who engaged with you."

I would speculate that Autistic Kid was playing differently not badly and it's impossible to say he lacked concern for other people. Autistic Kid's other kiddie crime was to "only talk to adults when [he] wanted them to do something" so we know he communicated via speech. Anyway, it turned out that Autistic Kid is autistic.

Then Guardian Dad for the second time in a 700 word article, expresses how he hates himself for being right. Despite his professed aversion, he sure wants us to know about his rightness record.

The next section is outrageous and warrants a content warning. Remember this is aimed at a six-year-old child:

"You love your mother, which is good – because you make her life hell. Without your outward signs of affection towards her I don’t know if she could maintain the abuse you put her through. I've watched a loving, kind woman become a tired, hard, uncaring, dispassionate bitch. But all this is aimed at me, with you only getting the occasional frustrated tone, or at worst a sigh of irritation.

She loves you with all her heart, but that means there is no room for anything else. She will fight for you until her last breath. But any type of intimacy between the two of us has vanished. In six years she’s aged 20 while I’ve put on 30lb and have become more isolated than ever. I hold back as much as I can, but sometimes I snap. I’m sorry. I know it distresses you when we argue, and I hate myself for doing it." [My bold]

There is so much wrong with this. Guardian Dad ignores the power relationship between a small child and an adult couple. The child is not abusive- he isn't using coercive behaviours to maintain power and control over the parents. He has a developmental disability that affects how he perceives and interacts with the world. He may well have multiple sensory sensitivities. And believe me, Autistic Kid is picking up on how Guardian Dad feels about him and his mother.

I am disturbed by Guardian Dad's venomous depiction of his wife and the revelation that he sometimes snaps and argues with his wife though he knows it distresses Autistic Kid.

Guardian Dad feels "bereaved – for the family I should have had. I am a good person and this should not be happening to me." He talks about how he thinks about leaving. Poor Guardian Dad, my heart bleeds for him. He was owed a more perfect life than this with a faulty child and a tired, hard, uncaring, dispassionate bitch for a wife. And he got fat. None of this is his fault, oh no he's a "good person". We know this because he says it though he doesn't share anything that shows it.

"But we love you more than ever. You’re not responsible for any of this – it’s your disability. We know that you try your best, but you become confused and anxious about everything that is going on around you. Neither your mother nor I know what the future will hold, but we still feel the same way about you today as that first time we saw you."

Guardian Dad is blaming Autistic Kid even though he knows that the world is a scary place for him. Writing this letter to a public forum is not a loving act. It adds to the mountain of anti-autism rhetoric that will only serve to make life harder for Autistic Kid, my own son, and all other autistic people.

Guardian Dad absolves himself from all responsibility. He resents the time his wife spends with his son. He directly places the blame for life not turning out how he wanted it to on the shoulders of a disabled child.

If he had written this to his therapist that would be ok. If he had written an article expressing how he finds it difficult to father his autistic child and described some of the problems they had faced, that would also be fine- so long as he didn't blame the kid. If he had described how social security cuts are impacting on his family and how he has to fight for support I would applaud him. If he had come to me in my work and shared these thoughts with me I would have encouraged him to figure out what he could do to make things better and helped him get appropriate support from various agencies. But Guardian Dad wrote a very public letter even if it is anonymous. His sense of entitlement and self-absorption shine through every paragraph. The Guardian would never have published a letter from a father blaming their small non-disabled child for all their problems.

Autistic Kid didn't get the father he should have. I would like him to know: you keep on being your own awesome autistic self and I hope that one day you will know there is a community out there who will welcome, understand and embrace you.

Masters Assignment on Autistic Writers

noreply@blogger.com (Sharon McDaid) — Tue, 21 Apr 2015 16:52:00 +0000

In 2013 I submitted as assignment on autistic people's writings as part of my Masters in Autism (Adults) for the University of Birmingham. The title of the topic as set by the university and my essay follows:

There is an ever-increasing body of literature from people diagnosed with autism who are willing to share their experiences. Discuss and evaluate the potential impact of this body of literature upon other people on the autistic spectrum, upon autism researchers and upon providers of support and services.

This essay will describe the growing body of writing by autistic writers, particularly that which has flourished with the general increase in internet availability. It will show evidence of the significant impact these authors have had on research, on support and service provision and on the lives and experiences of other autistic people and their families, including the author’s own. Finally it will examine how autistic writings could impact even further in these areas in the future.

The essay follows the convention as in Sinclair (1999) of employing the term ‘autistic person’ rather than ‘person with autism’. In the author’s experience, the majority of autistic people, including autistic writers, have expressed a preference for this terminology.

Before examining the literature, I shall provide some illustration of the impact of autistic writings from a personal perspective. My son was diagnosed with Autistic Spectrum Condition when he was two years old and I read widely to determine how best to support and help him. All the books I read were written by autism professionals and while they were extremely helpful, I still had more questions than answers so I sought help online. The first websites I perused predicted dire outcomes for my (at the time) non-verbal son unless I engaged him immediately in biomedical or intensive behavioural therapy and they presented autism as a facet of the person that could be removed with just the right type and level of intervention. These websites encouraged me to aim to make him ‘indistinguishable from his peers’ but investigation of the techniques promising to normalise my autistic son established that their claims were based on little to no conclusive evidence. Instead I enrolled him in a specialist nursery school and he received speech and language therapy, the primary benefit of which was teaching me better ways to engage him and promote his communication.

In time I took part in a National Autistic Society (NAS) EarlyBird programme which aims to support parents of pre-school autistic children by ‘empowering and helping them facilitate their child's social communication and appropriate behaviour in their natural environment.’ (National Autistic Society, n.d.). I also joined a support email list with a membership comprising autistic adults and the parents of autistic children and young people. Via these I discovered the books of well known autistic authors like Temple Grandin and Donna Williams and for the first time read personal accounts of autistic lives and experiences.

Around the same time I found the site ‘Ooops...Wrong Planet!’ run by a Canadian autistic woman (Norman-Bain, n.d.) which at the time contained articles about all aspects of autism, most written by autistic people. One of the most challenging and ultimately transformative articles I read then was ‘Don’t Mourn For Us’ (Sinclair, 1993) in which parents are invited to join autistic adults ‘in strength and determination, in hope and in joy’ to teach, care and advocate for autistic children. These writings helped me change my goals for my son; from then I wished to accept and embrace his autism, to maximise his potential, to increase his opportunities and to work towards making the world a better place for people like him.

In 2006 I started to blog about my children, their education and autism (McDaid, 2006) and I joined other parents of autistic children, autism professionals and autistic adults in a blogging collective; The Autism Hub. This led to the steepest part of my learning curve on autism and disability mainly due to the interactive nature of blogging. The articles and blog posts I read by autistic authors and the discussions we had, challenged my thinking and assumptions on the most fundamental aspects of our shared humanity. Some of the autistic writers I connected with over the years became good friends, many were able to advise me on issues I faced raising my autistic son and all helped to deepen my understanding of disability and autism.

According to Baggs (2006) the first published autistic author was David Eastham whose book of poetry was published in 1985 (Eastham et al., 1985). Since then dozens of books and book chapters have been written by autistic writers, many of whom have gained recognition among the general public. One such writer is Daniel Tammet whose memoir ‘Born on a Blue Day’ was a best-seller (Tammet, 2006) and who appears frequently on television and radio shows. Also well known is Temple Grandin who has written 8 books, the first of which was published in 1986 (Grandin and Scariano, 1986) and who was the subject of the semi-autobiographical TV movie, ‘Temple Grandin’ (2010).

But the real revolution started when autistic people began to congregate online in increasing numbers to self-advocate, offer support, share information, socialise, educate and entertain. They wrote about the representation of autism in the media. They reached out to parents telling us how we could better understand and support our children (Grantham, 2011) and encouraging us to become more informed allies (Schwarz, 2004). They have written on how we must work towards real and meaningful inclusion (Evil Autie, 2013). They expressed justifiable anger for the abuses, vilification, silencing and neglect they have endured. They proved their resilience and strength, their bravery and compassion in the way they supported each other and continued to fight for their rights.

They found common ground with the general disability rights movements, rejected the prevailing medical model of autism, promoted social model ideas based on the concept ‘nothing about us without us’ and clarified that they are the real experts on autism. They faced tremendous barriers in their efforts to instigate a rights-based model of autism advocacy. Their ideas have been misrepresented and they have even been accused of lying about their diagnoses (Lutz, 2013). But they forge on and via their writings, autistic people proved that being unable to talk is not synonymous with having nothing to say.

Autistic writers introduced the concept of ‘neurodiversity’:

‘… a word that has been around since autistic people started putting sites on the internet. It has since been expanded to include not just people who are known as "autistics and cousins", but to express the idea that a diversity of ways of human thinking is a good thing, and dyslexic, autistic, ADHD, dyspraxic and tourettes people to name but a few all have some element in common not being neurotypical in the way our brains work.’

(Arnold, n.d.)

The crux of neurodiversity is that it is ‘part of the general idea that disabled people should have human rights’ (Dawson, 2007).

Clearly autistic people don’t comprise a homogenous community. As in any disparate collection of people, disagreements are common but people speaking their mind and sharing their perspectives leads to positive change.

Autistic people diagnosed with different categories of autism, from disparate backgrounds and possessing a variety of skills have contributed to this growing body of work. They may be university educated or living in a group home or have experienced homelessness. Some communicate using forms of augmentative and alternative communication (AAC), others have high levels of verbal acuity. A number of them require help with many aspects of everyday life, others are raising families or running large companies. There are autistic writers who share their desire to cure their condition. Many have co-existing medical conditions or write about the intersection of autism with other aspects of their lives. There are people who fit all the previous descriptions in some ways or at some times and more yet who defy categorisation but all share characteristics that define autism.

The democratisation of writing via the internet has meant that people no longer must find a publisher before their ideas can be shared with the public. Moreover, comments sections and social media sites like Tumblr, Facebook, YouTube and Twitter encourage interaction so there are fewer passive readers but a growing group of participating readers and writers. The tools for communicating online continue to change in pace with technological advances and autistic writers are adept at using every means available to share their messages.

This body of literature by autistic writers has demonstrably impacted significantly on other autistic people. My understanding of my own autistic son has been enhanced by all the articles and books by autistic writers I have read over the years and our interactions. They helped me reach acceptance of his condition faster than I otherwise would have and raised my expectations for his future happiness.

Autistic writers have been successful in getting their messages across on their own blogs and forums but also via mainstream media. Although the typical depiction of autism in the mainstream media is still of a young child and the negative impact on the family of the child’s disability, articles based on interviews with autistic self-advocates are also reaching wide audiences. Saner (2007) reported in The Guardian on autistic self-advocates and allies. More recently, The Guardian had an article about businesses seeking out autistic employees and the autistic young people making a success in their careers (Hill, 2013) which will impact on and encourage other autistic people.

Hacking (2009) writes about ‘autism narratives’ which ‘are creating the language in which to describe the experience of autism, and hence helping to forge the concepts in which to think autism.’ He considers four published autistic authors and suggests that autism fiction and autobiographies will influence future generations of autistic writers ‘who will give accounts that are textured by the early exposure to role models.’ He also explores the tendency for publishers to insist that these autobiographies provide otherwise impossible glimpses ‘inside the [autistic] mind’ a claim, he says is lacking in their promotion of non-autistic biographies.

McGeer (2009) writing about Hacking (2009) suggests that autistic peoples’ writings have an immense impact on other autistic people:

‘As their external environment changes—as it becomes more enriched from the perspective of offering more informed, and hence more suitable, kinds of emotional and physical support, teaching and therapy—so too will their own developmental prospects be transformed. (…)

If autistic self-narratives have the power to change those conditions for the better, then autistic self- narratives have the power to transform what it is to be autistic.’

The Loud Hands Project is a community based, multimedia publishing and creative effort by the Autistic Self Advocacy Network. It has already sourced funding via donations from the online autistic community for an anthology of autistic writing which was published last year (Bascom, 2012). This book collates previously published material alongside new articles and each author is autistic. Julia Bascom, project founder and editor of the book writes in its foreword about the how important autistic writing is to other autistic people. Without exposure to such literature autistic people can grow up feeling adrift and isolated :

‘One of the cruellest tricks our culture plays on autistic people is that it makes us strangers to ourselves. We grow up knowing we’re different, but that difference is defined for us in terms of an absence of neurotypicality, not as the presence of another equally valid way of being. We wind up internalizing a lot of hateful, damaging and inaccurate things about ourselves, and that makes it harder to know who we really are or what we really can and cannot do.’

(Bascom, 2012, p.7)

Autistic people have described the sense of community they feel from the increasing prevalence of fellow autistics’ writings. They are collaborating with an increased sense of power and strength in numbers. They challenge the rhetoric of their lives as ‘less than’. They worked together to change Google’s auto-complete options following a search of the words ‘autistic people should…’ (Heasley, 2013). They wrote and campaigned to expedite the cessation of damaging and inaccurate advertising campaigns relating to autism (Kras, 2009) (McDaid, 2009).

Autistic people writing and connecting have instigated changes that impact on other autistic people by challenging current autism awareness campaigns (Durbin-Westby, 2012). They have clamoured for a greater say in organisations that claim to speak on their behalf, gaining roles such as National Councillor of the NAS (Arnold, 2002) and in the USA, council membership of the National Council on Disability (NCD, n.d.).

The increasing body of autistic writing is also having an escalating impact on autism research. Breakey (2006) writes that ‘autistic people have been viewed as contributing useful “insights” and “experiences” into the academic arena, but they have not been sufficiently recognized in the intellectual discussions and exploration of the condition’ but that this is changing as more autistic people speak out. She says that only autistic people themselves can understand what it is to be autistic and that researchers would make more gains if they stopped focusing on the ‘outside of the condition’ (the behaviour) and instead ‘focussed on what autistic people are’.

The vast majority of autism research focuses on neurobiology, environmental effects, potential causation and genetics. According to Singh et al. (2009) basic science research accounts for 65% of grants funded in the US from 1997 to 2006, clinical research for 15% and translational research for the remaining 20%. A very small fraction of studies focussed on epidemiology or family function and services available to autistic people. Singh et al. counted 308 new, publically-funded autism projects between 2002 and 2006, only 9 of which looked at family and services.

However when the opinions of autistic people are sought, they say they want research to focus on improving their outcomes and quality of life. Silberman (2012) asked some autistic writers their views on ‘what could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults’. One respondent, Paula C. Durbin-Westby, said that ‘Research priorities and dollars should refocus on communication needs’ and Ari Ne’eman said:

‘Research and science have always played a large role in disability policymaking, in large part due to a history of disability being viewed mainly as a public health issue. But while science can tell us much about how the world is, it falls to values to tell us how the world should be. When assessing the quality of different forms of service-provision, we should think about both efficacy and ethics.’

AASPIRE (Academic Autistic Spectrum Partnership in Research and Education, 2013) is a community-based participatory research partnership composed of health services and disability researchers, autistic self-advocates, health care providers, disability service professionals and family members. It was formed to challenge the:

‘misalignment between [autism] researchers’ priorities and those of the autistic community; a lack of inclusion of autistic individuals in the research process; use of demeaning or derogatory language and concepts; threats to study validity derived from miscommunication between researchers and participants; and the use of findings to advance agendas that opposed community values.’

(Nicolaidis et al., 2011)

Autistic people by writing and sharing their ideas are influencing the direction of autism research in other ways too. Autistic person Michelle Dawson was asked to join an autism research group after impressing principal investigator Laurent Mottron with her interest in the science and detailed knowledge of the literature (Mottron, 2011). Mottron explains that Dawson ‘has helped the research team question many of our assumptions about and approaches to autism — including the perception that it is always a problem to be solved.’

Donnellan et al. (2013) quote several autistic authors in their paper challenging the definition of autism as a triad of impairments (Wing and Gould, 1979) and call for increased recognition of the neurologically-based sensory and movement differences autistic people experience:

‘Any view of autism at this time needs to reflect the experience of self-advocates with autism and others who describe sensory and movement differences, as well as the latest in the neuroscience and child development literature. We need a research agenda that focuses on understanding and supporting autistic people and others in more respectful, personalized, and successful ways.’

Autistic writers are increasingly likely to critique research studies, especially those of interest to the mainstream media. This was demonstrated after a paper was published recently describing people who had been diagnosed with autism as children but who lost their diagnoses as they grew up (Fein et al., 2013). The study authors label these as an ‘optimal outcomes’ defined such ‘that the individual be without any significant autism symptoms and function within the normal intellectual range; however, other difficulties, such as weaknesses in executive functioning or vulnerability to anxiety and depression may still exist.’

Media reports presented this as a people ‘recovering from’ or ‘growing out of autism’ and autistic people took issue with the definition of optimal lives as being those without autism. Dawson (2009) wrote (on presentation of Fein’s data at a conference):

‘Dr Fein and her colleagues have determined the criteria for optimal outcomes in autism, and these criteria assume that autistics who remain autistic are suboptimal. Remaining autistic is an undesired, unsatisfactory, inferior, suboptimal result.’

Many researchers make value judgements about autistic people’s lives that do not correspond with how they themselves describe their experiences. It seems plausible that if more academics were to study the ever-growing body of literature created by autistic writers, there would be fewer misunderstandings and more progress on improving lives and outcomes. Even a slight shift in the priorities and funding of autism research away from causation and possible prevention of autism onto finding more effective ways to educate and support autistic people throughout the course of their lives, would lead to outcomes that could be described as truly optimal.

The increasing body of literature from autistic people willing to share their experiences will have a positive impact on service providers who base their practise on the best available evidence in supporting autistic people. In their writing autistic people promote the social model of disability and personalised approaches to support services, which influences policy and legislation and hence impacts on service providers.

Valuing People (Department of Health, 2001), a UK government White Paper on learning disability, makes proposals based on four key principles: civil rights, independence, choice and inclusion, all ideas promoted by autistic authors. The Independent Review of Autism Services in Northern Ireland (Maginnis, 2008) proposed that each Health Trust develop ASD Family Support services within their ASD specialist teams to provide ‘person centred’ advice and support to children/families and autistic individuals. Person-centred planning is based on social model principles of inclusion advocated by autistic writers.

Autistic people have been consulted at all stages of the development of the Draft Northern Ireland Autism Strategy (DHSSPS, 2012) (open to public consultation until early March 2013) and were among the membership of the Project Board established to manage and direct the development of the Strategy and Action Plan. The vision of the Autism Strategy corresponds with that in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2008) and includes participation, inclusion, respect for difference, equality of opportunity and accessibility.

The Northern Ireland Autism Adult Care Pathway (RASDN, 2012) advocates a person centred approach in which:

‘intervention, care and support –as well as the diagnostic process - will take into account individuals’ needs and preferences. Individuals with autism should have the opportunity to make informed decisions about their care and identified support needs, in partnership with their healthcare professionals.’

RASDN acknowledge that their Care Pathway cannot be fully implemented without significant investment and there are financial deficits within HSC Trusts. They intend to reconfigure service provision to better support autistic adults and say they will ‘endeavour to secure new resources where possible.’ Autistic people and their allies have lead the way in changing policy from a medical or charity based model to one of rights, participation, respect and equality and they will continue to work to ensure funding is in place to allow people to access appropriate services to make this vision a reality.

Autistic writers have challenged providers of support and services directly on how they can most effectively work with autistic clients. Lawson (2012) emphasises the importance of communication among all the agencies involved in working with an autistic individual. But as autism involves problems with communication, service providers do not always involve the autistic person when deciding what is best for them. She explains that these barriers can be overcome by using communicative technology. Finally Lawson asks that agencies encourage their staff to read and explore autism from the perspective of autistic people.

Autistic people have written about their experiences with providers of services. Many of them have shared their desire to be listened to, to have their concerns acknowledged and to be treated as individuals. They have discussed the labels often used by professionals to categorise people. ‘I Am Joe's Functioning Label’ (Harp, 2008) is a blog post eloquently demonstrating the challenges and needs that can be overlooked when a person is labelled as ‘high functioning’. In ‘Just Me’ (Sequenzia, 2012) the author describes how she can be thought of as ‘high’ or ‘low’ functioning depending on circumstances. She writes, ‘Functioning boxes are not definitions of who we are. They are simply a very narrow view of our complexities.’

These autistic writers ask that service providers and others interacting with them, avoid either minimising their talents or denying their very real impairments.

Amanda Baggs is an autistic woman with multiple chronic medical conditions who communicates via an AAC device. She is a talented and prolific writer who has covered many aspects of autism and disability such as ethics, representation and communication. She has written about the times she spent in institutions and the abuses she suffered and witnessed there. She has also written about personal care services she received in her home and the staff who provided these, detailing individual and systemic failings in her care. She describes the many ways in which support staff have used their position of privilege and power over her and others to perpetrate different types of abuse, from threatening to withdraw necessary services, infantilising adults, making decisions without consulting the person in receipt of services, disrespecting bodily autonomy and privacy to physical intimidation (Baggs, 2012). Baggs lives in the USA but the comments on her blog posts from readers all over the world attest to the universality of her experiences.

Agencies and staff members who read these accounts of how it feels to be an autistic person receiving services are likely to have a greater insight as to how they can impact on a person’s life and to have more understanding of how to use the power they hold as care providers, in ways that are respectful and enabling.

One of the most crucial services any person requires is adequate and appropriate healthcare. According to Article 25 of the UNCRPD (2008), ‘States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.’ Accordingly, autistic people should receive the medical care they require just like anyone else.

However, as recently as March 2013, Amanda Baggs has faced intense and sustained pressure from members of her medical team to eschew the life-saving treatment she required (Cohen-Rottenberg, 2013). Amanda wrote about these incidents on her personal blog and her story was quickly shared by people in the online autistic community, many of whom contacted the hospital to seek assurances that she would receive appropriate medical care. She has since had the necessary treatment but many other autistic people without her outreach face similar discrimination in healthcare services. This incident demonstrates how crucial autistic writers are in highlighting these situations and how much progression is still needed before autistic people are treated as equals.

As the diagnostic criteria for autism have been widened and more people are diagnosed with the condition and with the near ubiquity of the internet, there has in recent years been a surge in the numbers of autistic people writing about their lives. The body of literature these people create continues to grow each year and the scope of its influence increases correspondingly. Without this writing we would know far less about many aspects of life as an autistic person. Other autistic people would not have the sense of community and belonging these writings have provided. Many of the achievements the writers have worked for would have been forfeited. Autism researchers and service providers in particular still have much to learn from the writings of autistic people.

As the dominant narrative shifts from the impact of autism on parents to those who are the real experts on the autistic experience, the focus will shift into greater acceptance, understanding and ways to support and enable autistic people. Autistic peoples’ writings will continue to transform and impact on all those in the autism community.

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Yes to Marriage Equality

noreply@blogger.com (Sharon McDaid) — Sat, 18 Apr 2015 09:32:00 +0000

I've just written about our wedding on April 9 and described what a beautiful and perfect day it was. I had married before, 19 years ago. It was an unhappy marriage that I tried for many years to fix before coming to accept, with the support of many people around me and the help of Women's Aid, that staying married would destroy my life and likely those of my children. The separation happened four years ago and the horrendous task of divorcing took a few years more.

I am forever grateful to the people who helped the children and me through that time. I am indebted to all those who over the years, campaigned to change the definition of marriage and make divorce legal. They ensured that children receive the protections they deserve and their efforts meant that I could be free from a terrible situation and, as a person who'd had to stop paid work to mind the children, was not left destitute.

For years after the separation I was a single mother of three. For one of those years, my sister lived with us and for all of them, all members of my family and our friends, have been there for us providing practical and emotional support when we needed it. We never stopped being a family even though we did not fit the proscribed model of a nuclear family. I've often heard campaigners against equal marriage bang on about how children deserve a mother and a father. What children need, as I have discovered, is to be free from abusive situations and to have access to people around them who love them and on whom they can rely. The precise set-up is not important.

I had never expected to find love, yet in July 2012 I met a man who I am now married to. He and I are perfect for each other; as I said on our wedding day, his weirdnesses and mine match! It was important for us as a couple to marry. We wanted to make our union legally binding, to demonstrate to the children that we are both there for them for the long haul. We wanted a party and a chance to show our friends and family just how much we mean to each other. We wanted to be husband and wife.

Everyone is entitled to arrange their relationships in whatever way works best for them. My relationship is no better than that of my friends who opted not to marry. I don't think that anyone needs to marry to be committed to their partner. Many people oppose the institution of marriage for perfectly valid reasons. But what all people deserve is to have that choice. I have heard the reasons people have given for opposing equal marriage and none stand up to scrutiny. There is no reason why marriage need be between a man and a women only.

The joy we had on being able to marry, the ability to make that decision is something all people ought in a civilised and caring society to share. The only reason why anyone would deny that to other couple is because they think those relationships are less important and that is an opinion based on bigotry. Our children are listening, we need to let them know that they are all valued and that we oppose the dreadful bigotry that LGBT folk of my generation endured growing up. We need to end this ridiculous inequality in all corners of Ireland and let them ALL grow up with the choice to marry or not marry as they see fit.

Our Wedding

noreply@blogger.com (Sharon McDaid) — Sat, 18 Apr 2015 08:50:00 +0000

Thursday April 9th was the best and happiest day of my life so far. My three children, our closest friends and beloved family members gathered with me and the man I love, to witness our marriage. We had the ceremony in Belfast City Hall with a registrar who did everything she could to make it special and personal while also accommodating Ryan's needs. We and the children walked in together and Ryan read out his own words:

"I am happy today because my mum and Micheál are getting married. That is great and loving and wonderful.
Micheál is my friend. He is funny and sometimes silly. We go to Tesco and he buys me the right cookies and DVDs. I like taking him to the cinema.
My mum is beautiful and kind. We go to the Transport Museum and W5 and the funfair.
Our family will always be friends and love will win the day."

By Neil Arthurs Photography

We exchanged our vows including some we'd written ourselves:

In all the world, there is no heart for me like yours.
In all the world, there is no love for you like mine.
I promise to be your sidekick and your best friend, to keep laughing with you, to mind you when you need it and lean on you when I need it.
(To love these 3 children as I officially become your partner in their lives)
To share all my joys and sorrows with you,
To love and support you through sunshine and rain for the rest of my days.

By Neil Arthurs Photography

My two boys in the photo above are dealing with events in their own way; Michael, like every other man in my family, was in bits crying and Ryan was perfectly at ease listening to his music.

I had been able to find a poem to read out, The Present by Michael Donaghy, that expresses beautifully what this means to me and which fits with both my nerdy and sentimental sides:

For the present there is just one moon,
though every level pond gives back another.
But the bright disc shining in the black lagoon,
perceived by astrophysicist and lover,
is milliseconds old. And even that light’s
seven minutes older than its source.
And the stars we think we see on moonless nights
are long extinguished. And, of course,
this very moment, as you read this line,
is literally gone before you know it.
Forget the here-and-now. We have no time
but this device of wantonness and wit.
Make me this present then: your hand in mine,
and we’ll live out our lives in it.

And Michéal read The Sailor's Vow by Alan Jenkins:

The life I spent so lavishly
Before we met
Seems one long night, in memory,
Of sea-fever and sea-fret –
Which led me here, to you, to this:
Our haven below decks.
You anchor me, I you, with a kiss
(Though the coast is strewn with wrecks).

Official documents were signed and we were officially and legally married and it was time to celebrate.

By Neil Arthurs Photography

Everyone was gorgeous and looks beautiful in the photos.
Our reception was in the Harlem Cafe Belfast just round the corner from City Hall so we just walked over and enjoyed a few glasses of prosecco to get the party started. And boy did we party.

Photo by Red Mum

Before we had our meal, Micheál and I, his uncle and my dad all gave short speeches. Dad told everyone how Micheál had brought happiness to our home. I managed to gulp-weep just twice and since I usually cry st the least wee emotional boost, that was pretty good going. When we'd finished, my daughter Tara stood up and in her very own way, said how much she and the boys love us both and are so happy to see us marry.

The food was gorgeous and plentiful, the staff were fantastically friendly and helpful, and everyone I spoke to said it was the best wedding meal they'd ever had. Then the music kicked in and shoes were kicked off as my gang and his took to the floor to see who had the best moves- the Dubs or the Nordies. There were no winners, but what we lacked in grace and ability we made up for in joyful exuberance! And what made my heart sing was how obvious it was that all our guests were having a fantastic time. Best of all though, was how delighted my three children were with the marriage and the day itself. We had prepared a chill-out zone for Ryan and had plans in place to take him away early if the crowd and noise became too much for him. But he was in his element hanging out with his cousins, yapping and dancing. At one stage he was even swinging around to the Pogues with Micheál's aunties! No one could have predicted that.

It was a day filled with love, laughter, music, wine and good food. We were floating on the wave of warm feelings and enthusiasm from all around us, both our guests and from people who couldn't be there but sent messages filled with love and kind wishes. People got to see why we wanted to marry, to understand how Micheál, me and the kids are family. It was the most perfect day imaginable and if I'm ever stressed or low in the years to come, I will close my eyes and recall the moment when I was serenaded by 3 Smiths to this and all will be brighter.

(I've written a follow-up post on why everyone should be able to have their day.)

Never Say Never

noreply@blogger.com (Sharon McDaid) — Tue, 03 Mar 2015 17:45:00 +0000

In Saturday's Guardian was an short piece called "What I'm really thinking: the grandmother of an autistic child" in which a woman describes an outing with her 7 year old grandson Jimmy. Obviously we need to have some insight into the difficulties this causes her because that's the standard narrative for any and all articles on autism which centre on a family member and not autistic people themselves. So Grandma describes how "the red-faced Jimmy who is almost out of control" is "screaming and lunging violently at the locked doors" of some public toilets.

Later when Jimmy has settled Grandma discloses that she "like[s] to imagine" that they look normal and admits that few of her friends know that she has an autistic grandson in case they offer what she describes as "well-meaning but inappropriate advice" such as a book recommendation by an autistic author. "It breaks my heart because I know that Jimmy, even with the best help in the world, will never be able to read or write or lead a “normal” life."

I have not bothered to comment on a Guardian article for a few years but I wanted to reach out to this woman. I swallowed my distaste for the assumptions and probably unexamined attitudes regarding disabled lives and the potential to learn and develop. So doing my best to be considerate and temperate, I left a comment:

"If your friend's advice is to read books by autistic authors, then it is both well meaning and appropriate. Also, you cannot possibly know that Jimmy, aged only 7, will never be able to read or what kind of life he will lead. Your love and the time you spend with him coupled with good education and natural progression will help him live up to his potential. Take heart!"

The most helpful thing to me in knowing how best to help my son has been listening to people who know what it's like to be autistic. Dismissing advice to read autistic writers is to my mind, ill-considered. Also it bothers me to read comments of the "my child will never" variety and we've all seen them numerous times in autism discussions. Sparrow Rose Jones wrote about the damage such statements can do:

"So . . . what is it that you are actually saying when you look at my life and say that I am not like your child? In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change."

My autistic son will be 15 this year. I can't possibly list all the skills and knowledge he has amassed since he was 7 and like all of us, he will continue to learn and progress throughout his life.

(A couple of detractors took issue with my comment, but they showed so little insight and understanding that their views are beneath my regard.)

Assembly Manual for Autism Articles

noreply@blogger.com (Sharon McDaid) — Sun, 01 Mar 2015 12:51:00 +0000

I haven't seen one of these for a while- a newspaper article on a parent's view of autism that adheres rigorously to the template I wrote in 2008. Today offering is titled Autism and ABA: 'My beautiful, fun little boy was slipping away from me'. In this, we learn how wealthy, beautiful and accomplished Tanja Gullestrup uses tough-love therapy to "stop her losing [her three-year-old son] to this isolating condition".

So here's Step 1-4 of the Autism Article TM Template (Step 5 is optional and refers to vaccination-bashing autism articles) :

1: Baby is born
2: Everyone rejoices
3: Baby grows
4: Mum realises baby is somehow different, something is not quite right,

And lo! the template it doth predict the story most accurately as we learn that the "usually smiley and playful" child "wasn't making eye contact with anyone and didn't appear to be taking in anything going on around him. It was like someone had flicked a switch in his head" and he "had begun to withdraw into his own, self-contained universe".

Step 6: Mum struggles to get anyone to take her concerns seriously. Her husband might think she's worrying about nothing and that no child of his could possibly be anything less than perfect. All the doctors she encounters are callous and all the other professionals are harsh and unhelpful. Eventually, one special therapist or teacher (but not a medic) comes along who understands and for the first time, really listens.

And as outlined in step 6, this parent is convinced that the NHS would fail her son:

" Left in the hands of the NHS, she points out, Konstantin would so far have had little more than speech and music therapy, ‘neither of which would be giving him the skills that he needs to survive and have a life of dignity. Children on the autistic spectrum need to be taught how to fit into society, and the real cruelty comes from neglecting to do that.’"

My autistic son has never had any form of ABA(TM) and yet he is living a life of dignity. Nor is it cruel to ask that society accepts neurological diversity.

Step 7: After much effort and heartache, Mum is devastated to learn that the explanation for all the child's problems is this terrible curse known as Autism.

And here comes the devastation:

"a developmental paediatrician confirmed what she had not wanted to admit, even silently to herself – her son was indeed on the autistic spectrum. ‘I felt as though my heart was being ripped out,’ Tanja recalls. ‘My mother was with me, thank goodness, and as we left the hospital, I was physically sick. I am a fighter by nature but in those darkest hours I definitely became unhinged.'"

Step 8: Just so we know how hard their lives are, how terrible this Autism thing is, several examples of the child's terrible behaviour are described, the tantrums and self-harm, the strange humming and abnormal interest in trains. This makes the book "gritty" and "unflinching" in the newspaper book reviews and is generally thought of as a good thing.

This child is so young that no Step 8 examples of violence are provided. Instead, his strange otherworldly behaviours are outlined:

"his speech regressed and he no longer responded readily to his name", and "in the weeks leading up to [the child's] diagnosis he had begun to walk on tiptoe and repeatedly pull his hair. He also opened and closed doors incessantly and became obsessed by pushing buttons on electronic toys."

Step 10: The warrior phase commences. Mum finds out stuff the doctors don't know or didn't want her to know. She arms herself with superior knowledge, garnered from a motley crew of brave mavericks or comes up with some self-directed plan, and goes medieval on the autism.

Step 11: Mum is a lone crusader, challenging authority and staying strong and calm in the face of what to ordinary mortals would be insurmountable obstacles. But Mum reveals the real terror she felt, the depression and anxiety, the tears and sleepless nights, all due to the autism which has seized her child and holds him or her hostage.

"[Mum's] quiet confidence is centred on the conviction that, while there is no ‘cure’ for autism, she is providing the next best thing for Konstantin – a radical, tough-love therapy known as Applied Behaviour Analysis (ABA)."

"However as she began to seek help, Tanja also realised that she was facing an uphill struggle. In the US, ABA is tried and tested – successive studies have shown that half of children given full-time ABA tuition early enough start school and many need no further therapy at all. The other half make significant progress, too, reducing their need for special needs support. ABA is endorsed by the American Medical Association and in the majority of US states health insurance companies are mandated to cover ABA therapy. But in the UK, the National Institute for Health and Care Excellence has yet to provide ABA as an option for the treatment of autism. Its official line is that it cannot recommend ABA because a review has found no evidence to support it."

It is true that NICE, after a thorough investigation of the claims and the actual evidence, decided not to recommend ABA. But another claim in this paragraph needs to be countered: there is NO evidence whatsoever that 50% of children who receive early and intense ABA ever become "indistinguishable from their peers" (whatever that means). That is an utter fabrication based on a poorly written study from way back in *1987* which combined 40 hours of intense therapy with harsh punishments. Do ethics matter? As I have written before, why are standards so very low when it comes to autism?

And another point to make, when lauding Lovaas as a pioneer, bear in mind that he first trialled his ABA as a gay/trans conversion therapy.

Step 12: The intervention phase commences. The child gets older and matures, hopefully with lots of love and good education as well. But the intervention is credited with effecting a miraculous cure.

Step 13: The story ends by recalling just how far they have all come and how it would never have been possible without x,y or z (ABA, the companionship of a Golden Retriever or certain biomedical treatments). The child is said to be normal or recovered, as measured by a place in the Valhalla of this type of autism parent - mainstream school.

So this child, aged just three years old, is undergoing seven hours of ABA tuition, five days a week. Instead of calling social services the Daily Mail asks that we donate to her charity so that yet more little autistic kids will be subjected to the same. "‘He is using every ounce of his brain to do the work and, by the end of the day, he is exhausted,’ says Tanja."
I do not admire or condone this.

But let's see how if the template still holds:

"'...the transformation has been astounding.’ Before starting ABA, Konstantin had become so unsettled, he was incapable of sitting still to eat, read or watch TV. ‘If you took a toy away from him, he’d scream for an hour, and when he woke at night, he howled the house down,’ says Tanja. ‘Within a week of starting therapy, he was making eye contact and engaging again, and within a couple of weeks he was toilet trained, which I had begun to think would never happen.’ Eighteen months on, he is content and compliant and plays happily with his sister"

The child is only three years old! How much of this can be attributed to ABA and how much to natural progression? My son is 14 and can do all sorts of things he couldn't manage when he was 2! Also, I strongly oppose any treatment that has "compliance" as a goal. Too many disabled people have suffered as a consequence of early compliance training.

I have decided though that my template though needs another step:

Step 14: pay now or pay later!

This step is exemplified in the following horrible paragraph:

"ABA is undeniably expensive. A full programme, whether carried out at home or in one of the handful of ABA schools in the UK, requires intensive teaching for up to 40 hours a week, 49 weeks of the year, and costs £45,000 annually, ‘which sounds a lot, but it is less than the £150,000 to £200,000 a year costs of residential care for young autistic adults once they become too big and aggressive to live at home,’ Tanja points out. (A recent study by the London School of Economics and Political Science estimated that autism costs Britain £32 billion a year, more than heart disease, strokes and cancer combined – making it the nation’s costliest medical condition.)"

"Too big and aggressive to live at home"! What a revolting statement. This sort of argument is particularly galling. There will be a high cost to provide appropriate lifetime support structures for some autistic people, and so what? Early ABA for all will not change that. People are entitled to the help they need as citizens whether they have a disability or not. The UN Convention on the Rights of Persons with Disabilities points of the problems of "putting a price tag on the basic human rights for a significant segment of the population".
Furthermore, "it is actually good economics to ensure that disabled persons are able to live up to their potential. When there are no obstacles in their way, disabled persons are employees, entrepreneurs, consumers and taxpayers, along with everybody else."

The article ends:

"For Tanja, life may no longer be whimsical and carefree, but it has resounding purpose. ‘I believe there is a reason why Konstantin was given to me,’ she says. ‘He is the most sweet-natured and loving boy and he is living proof of what can be achieved. If he can deal with the challenges of autism, then so can I. So every day, we carry on and we count our blessings.’"

Life has purpose for all of us. Being mother of a disabled kid makes you no more special or worthy than anyone else. I count my blessings every day too. I just wish that the sort of autism-mum story exemplified by this article would no longer be given a platform. It's beyond time to amplify the voices of the real autism experts, the people who are themselves autistic.

"Autism-Sucks" Parents Dominating Jerry Seinfeld Autism Analysis

noreply@blogger.com (Sharon McDaid) — Mon, 17 Nov 2014 11:15:00 +0000

Before reading this post read Paula C. Durbin-Westby's recent blog post on media framing of autism stories and the real harm this is causing to autistic people.

Jerry Seinfeld by David Shankbone via Wikipedia

And once again, the parent of an autistic person is given space in a newspaper or magazine to spout off about how awful their lives are, what "real" autism is like and crucially, how dare Jerry Seinfeld claim he has anything in common with their lost and damaged offspring.

First out of the blocks on November 10 it was teacher of creative writing, Marie Myung-Ok Lee in Salon telling us all that "Jerry Seinfeld’s not helping: Celebrity autism claims distract from reality and research." Two days later we had Peter Holley writing for The Washington Post: "For some parents of autistic children, Jerry Seinfeld’s self-diagnosis was ‘a slap in the face." Holley hilariously depicts the awful, anti-vaccine organisation Age of Autism as an autism news site! He quotes infamous extremist Kim Stagliano and Theresa Cianciolo, another mum of an autistic child who are both vexed with Seinfeld.

You may think that two articles on this matter would be enough. You'd be wrong. This morning I encountered a third which follows exactly the same formula. This time it's Roger Alpher in Haaretz: "My son has autism, Jerry Seinfeld does not." All these articles follow aspects of the Autism ArticleTM template.

In all three articles Seinfeld is accused of diminishing their version of the reality of autism:

From Salon:

"To veer to the other end of the spectrum, the sporadic — but steady — news of overwhelmed parents killing their own children warns of a crisis building in our own homes. Many of these cases have been mothers, but before we explain it away, as it has been, with gendered suggestions of mental illness, attention seeking, etc., let’s also remember this story about a father — and high-ranking former Bush official — who shot his autistic 12-year-old son in a murder-suicide inside their suburban McLean home."

"Our own family’s out-of-pocket expenses of raising a child with autism average $20,000 to $30,000 a year — as it has, very consistently in the last 10 years — including schooling, legal fees, therapies, childcare, which puts us exactly in the CDC’s estimate of $21,000. If the high rate of autism isn’t disturbing to you, consider that the cost to care for and house a severely autistic adult for life easily exceeds a million dollars, not to mention forgoing the tax revenue, etc., if the person could participate fully in society. Taken in aggregate, the CDC tells us, “the societal costs of caring for children with ASD were over $9 billion in 2011. And I haven’t even begun to address the emotional costs, of having a child who can’t speak, connect, one that might be a danger to himself and others."

"these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable.

and:

"It’s only a matter of time before another child is killed, and we won’t even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola."

Phew! So to summarise, real autism makes parents kills their children, it's an emotional and financial burden, and it's worse than Ebola. Now that's a hell of an attitude. Ebola has killed over 5000 people in West Africa so far and the WHO estimates that over 20000 cases are likely by the end of this month. But hey, that's away over there in Africa so it hardly matters. Also murder apologism is not something that Salon should give space to.

And on to the Washington Post and their view of real autism, as opposed to the quirky fun and fashionable autism Seinfeld has diagnosed himself with:

“My kids’ lives are irrevocably altered by autism and not in a good way,”

“Autism is a neurological condition that requires a clinical diagnosis based on serious behaviors and issues and challenges. It’s a medical diagnosis, not a personality or a gift.”

“Jerry, if you think you have autism, come over to my house for a night, and we’ll show you what it’s all about.”

“When your child gets an autism diagnosis, it’s devastating. Your life is now over. Your life is your child’s life, and you are forever bound by that diagnosis.”

“It is generally a slap in the face to thousands of parents who have to deal with a child who is non-verbal or severely impacted by autism to compare those children to Bill Gates or any other famous individuals, even of those individuals display some of the minor characteristics of a major condition,”

While Holley ought to have sought out an alternative parental view to those of Stagliano and her ilk, he did interview 2 autistic adults who provided a bit of balance to the piece though the views of the "autism sucks" subsection of parents were given prominence.
One thing that is especially troubling is the assertion that the diagnosis means your life and that of your child is over- that's an appalling claim especially after the recent high number of murders by parents of autistic children. And that's something that ought to have been challenged by the journalist.

Finally, let's look at what they say in Haaretz:

"When Seinfeld is interviewed, he maintains eye contact, distinguishes the important from the trivial, ignores distractions, and speaks to the point. He doesn't lick his hand or interrupt the interviewer with a question that reflects a level of understanding like that of a 5-year-old.What can one say? On the spectrum, a great life."

"But Seinfeld’s nonchalant self-diagnosis is a joke of sorts at the expense of my son, Yotam. While Seinfeld preened with a little autism on television, I sat with Yotam in our living room, together with a social worker. Yotam is 19, but incapable of being responsible for himself. "

"For parents, the diagnosis of their child as autistic is a terrible blow. For him and them, lifelong. Parents of autistic children suffer from high levels of tension and anxiety. And that’s in the best cases, where the children are high-functioning."

My son is autistic. That a famous man has stated that he thinks he shares some characteristics with people diagnosed with autism affects us not a jot. Autism comes in different flavours in different people. While it is often difficult to adapt to the idea of parenting a disabled child, the diagnosis of autism does not have to be devastating or a terrible blow. It can be the first step to knowing how best to support your child. I also reject functioning terminology as it can ignore talents and skills as well as diminishing difficulties and needs. These parents do not speak for me or my son.

Dear mainstream media, we've heard enough now about how it's unfair for Seinfeld to be in anyway linked to autism. Can you now start to change the dialogue, open it up to more autistic people, let them tell you what they need to thrive and listen when they point out harmful practices and narratives. These 3 stories you've published help no one and add nothing. You have power and in my opinion, a responsibility to help people like my son. Stop diminishing him.

What kind of people commit violent crimes?

noreply@blogger.com (Sharon McDaid) — Wed, 28 May 2014 11:04:00 +0000

Last week two of the most beloved and significant people in my life were victims of a violent crime. Their home was violated. It was a vicious physical and verbal attack. I shake with anger when I think of what two grown men did that night to people who are only ever kind, helpful, supportive and loving to their family and neighbours. It shakes you to the core when something like this invades your family. I want to do the impossible; turn back time and stop it from ever having happened. The people I love will recover from the physical assault. It will take longer for the psychological damage to repair. They have their family, friends and community around them giving support in any way they can. I can't express how grateful I am to these good people for what they are doing to help. I hope the police catch the perpetrators- they are dangerous men who ought to be locked up where they can't hurt people for criminal gain. I never use the word scum to describe humans but for them, it fits.

In the past few days, certain sectors of the media have claimed (with no evidence to back their assertion) that autism is linked to violent crime. No folk, it's not autistic people we need fear, it's abusers, scammers, bigots, zealots, entitled and over-privileged arseholes, thieves and thugs. They're the people who will do whatever it takes to gain what they want and to hell with the hurt and damage they cause other people, the people who really lack empathy. Autism is not a crime.

Post for #BADD: Stop Excusing Murder

noreply@blogger.com (Sharon McDaid) — Fri, 02 May 2014 14:35:00 +0000

Trigger warning for discussion of child murder. Please call your emergency services or local crisis support number if you need immediate and urgent help.

Samaritans UK 08457 909090
Samaritans Ireland 116 123

This is a post for Blogging Against Disablism Day 2014.

Disablism means discriminating against people due to their disability. It's unjust and unfair. Disablist attitudes abound in our society and worsened in the past few years as a result of robust campaigning by certain political parties and media outlets depicting disabled people as lazy, scrounging cheats.

Disabled lives are accorded less value than the lives of people not currently disabled. This even applies to children. I've been appalled over the years by the steady stream of news stories about parents killing or attempting to kill their disabled children. And each time the tragedy of a life lost is portrayed as understandable because, after all, the dead disabled person was such a burden. The parent who killed the child is described as devoted, loving and most of all, long-suffering.

Last week it happened again. In England, 4 year-old Olivia Clarence and her 3 year-old twin brothers, Max and Ben were found dead in their home and their mother Tania has been charged with their murder. The 3 young children were killed while their father was abroad with their older sister.

I first read about this awful crime via an article in The Independent with a headline describing the woman subsequently accused of murder as a "devoted mother". On social media outlets, people rushed to defend and explain Tania Clarence's actions. The justification as far as they are concerned, is that the dead children all had type II spinal muscular atrophy, a genetic condition that can cause fatal respiratory problems and shorten life expectancy. This is just a small selection of tweets about the case. Try to imagine how they would read if the murdered children did not have a medical condition or disability:

So sad. You can't judge unless you are in that life, don't try - just have some compassion http://t.co/HEVcDj9hzA
— Hannah Cock (@drhannahrc) April 26, 2014

Thoughts are with Tania Clarence who must be going through hell. It's awful what she has done but equally horrific for her and her husband.
— Dava Roopchand (@Dava73) April 29, 2014

Pity @SantoshVKalyan received abuse for tweet re. Tania Clarence euthanising her kids. An issue that merits discussion, not demonising.
— Jacques Rousseau (@JacquesR) April 29, 2014

"@margiedgander: Feel very heartbroken by the story of the Clarence family #TaniaClarence"...> Only a #motherslove can explain it
— Al Zoya (@Al_Zoya) April 28, 2014

Tania Clarence - who killed her three terminally ill disabled children, was a devoted mum, but couldn't cope & cracked under the strain.
— catherine henderson (@catsatwork) April 27, 2014

Especially vile was the follwing tweet from a South African MP:

I and many others retweeted this with criticism which caused her to think again about what she had written. A few days after posting it she deleted the tweet and apologised for having offended people saying she didn't mean it and that she's a nice person. I'm glad she apologised but that doesn't make up for an MP thinking it was correct to share that awful opinion in the first place.

There's a Mumsent thread in which the mother accused of murder is accorded nothing but pity with posts on the "terrible" and "intolerable" burden she had faced, and in which she's referred to as a "Poor, poor lady...hope she's getting the support she needs."

On a post on Irish site The Journal some are attempting to justify the murder of 3 children aged 3 and 4 years old with comments such as, "The children all had genetic life limited conditions . Maybe she wanted to end their suffering. No one knows what it is like to watch your children dying." and "Unless you can walk in the shoes of a mum with a sick child, let alone three sick children, you cannot possibly judge her actions."

I do not need to walk in anyone's shoes to know that murder is wrong. These children had their most basic human right taken from them. What happened to them is cruel and despicable. It is no less wrong than if they were typically developing little kids. When people explain the murder of disabled children as resulting from caregiver burnout or limited service provision, they are putting blame on the victim. Many if not most crimes are committed by people in desperate situations and those criminals don't have countless supporters asking us "to walk in their shoes" and "not to judge". As Paula C. Durbin-Westby wrote (on the all too frequent murder of autistic children by their caregivers),

"No one finds it necessary to defend people who murder because they are poor, stoned, broke, or in other difficult situations. And they certainly don't blame the victim. And they don't ask you to walk in the murderer's shoes. And they don't tell you to shut up if you won't."

So I will continue to judge and to work towards a society in which disabled people are respected not treated as burdens and disability is recognised as part of the human spectrum of experience.

Ryan Movie Maker

noreply@blogger.com (Sharon McDaid) — Tue, 29 Apr 2014 11:16:00 +0000

I asked Ryan if I could write a blog post about him and as long as he didn't have to write anything himself he was happy enough. So I'm going to try to tell you about my boy and think the best way is to share some of his creations.

He has always loved films and PC games and has been fascinated by all the different characters. He has learnt so much from wanting to find out more about his favourite characters from Disney films, Thomas the Tank Engine and even Kinder egg toys. He learned to type, read and write because he wanted to be able to Google their names, he learned colours and numbers from Thomas and his Friends. In the past few years he's become fascinated by cinema and is working on a few feature films of his own that he's convinced will be shown in our local cinemas at some stage. We go see a film together at least once a week (and thank the stars for the Cinema Exhibitors Card allowing his carer free entry) and he knows and is known by almost all the staff. In one cinema they even arranged for him to visit the projection room a couple of times. He takes photos of each screen after the movie ends and knows in which screen of which cinema on which date and with whom he saw every film he's ever seen.

Ticket for Ryan's forthcoming Minecraft movie

He's also kindly detailed running order of ads and trailers for the benefit of the cinemas and has a poster letting us know who else is involved in this work of creative genius:

Most recently he's been animating a Minecraft movie in association with Pixar. The boy thinks big! He's even adapted the Pixar logo to fit.

He has also invented a load of new characters and has been making films about their trials for a while too. My favourite thing about these folk is the "wiki" style character breakdowns he created (click each picture to read):

All about King Elton

All about Malcurtis Eves

All about Zunarmny- best bit of this is his dislikes ;-)

He definitely prefers the bad guys, I mean look at those lists of personality attributes! I've had to explain what they all mean lately so we've had lots of talks about character and how people think, feel and behave. It's all very high concept stuff but when he asks the questions, he's ready to learn.

He spends hours working on these and I am quite happy to let him indulge in his hobby. I love how he draws the characters and then creates their Minecraft version:

I enjoy the detail he inserts in his images, most of which seem to focus on sword fights and desperate battles!

That's Robin Hood 3D (Ryan's alter ego) fighting the evil Zunarnmy- IN HELL!!!

I'm sharing just 2 of his more recent creations. First we'll see Merida battling the evil Lord Elton:

And let's end with the grisly demise of one of the bad guys:

So that's a snippet of what Ryan has been at when he's working away on his laptop. I don't know what what he'd be at now if he wasn't autistic- but that would mean the Ryan I have and love wouldn't exist so I really would never want to find out.

Action not Awareness for Autism

noreply@blogger.com (Sharon McDaid) — Wed, 02 Apr 2014 11:27:00 +0000

It's World Autism Awareness Day and autism is all over the papers and radio. Some of the stories are great such as this by Fiona O'Leary, an Irish self-advocate explaining why she opposes the Light it Up Blue campaign and seeking an end to negative rhetoric:

"Any research that will bring positive benefits to people on the autistic spectrum is welcome. However, the propaganda used by Autism Speaks is instilling fear and hatred about a condition that is struggling to find acceptance in society."

Some stories attempt to tug at the heartstrings such as the story of a 9 year old girl who wrote in school about her dearest wish- that her 4 year old brother be cured of his autism. In her letter she describes her brother's sensory issues as well as the efforts those who care for him are making at improving his communication skills using Grace App. The little girl comes across as very insightful and caring. It seems to me that she uses the words "cured" and "healed" as shorthand for educated and parented so as to help him to have the best life possible. It's just a shame that the media have jumped on her story as though autistic kids' lives are a tragedy and the only way to help them is to seek a cure.

According to a local autism charity, every council in Northern Ireland is Lighting Up Blue as is Channel 4 News (belying their reputation for thorough research and a good understanding of the background to the stories they report). Have we lost the battle to separate autism activism from the corporate blue of the despicable Autism Speaks?

Then last night BBC aired Horizon, "Living with Autism" presented by Uta Frith, which gave more insights into how autism researchers interpret their findings than on how autistic people perform in their Sally Anne and dancing triangle tests. In every instance the autistic way was coded as impaired, less-than. The language of the programme was inherently pathologising. It worked best when autistic people themselves had the chance to talk- though even then their words and actions were put into context by Uta as to how they differ from "ordinary" people. I liked it a lot less than I expected to.

However a nice thing happened as the show started, my son, my darling Ryan (aka Duncan) came in to say goodnight. I told him I was watching a programme about autism and he said, "Oh autism! I love autism. I'm the autistic boy!"

Ryan with his beloved Granda.

And that's what matters most to me. My child is autistic. He's here to stay and I need to work to make the world a safer and better place for people like him. That's why I want ACTION not bloody awareness for autism. Yesterday on twitter someone called for a cure for autism as he has seen autistic people locked up for decades in hospital, wiped out on anti-psychotic meds and unable to care for themselves. This doesn't motivate me to find a cure- but to act on behalf of the people who are being treated inhumanely. These people need freedom, they need action to help them communicate better, people who listen to them, and support to experience more of life. Autistic people need better education that doesn't stop when they turn 18 or 19. They need decent paid jobs, places to live with only as much interference from service providers as they need. They need the right benefits to get by, opportunities to engage in sports and hobbies. My boy will be moving into the adult care system in a few years. I'm just starting to look into what options exist and it's heart sinking. I'll do what I can to shake the system and every time we make progress, then call on the media to aware the heck out of whatever has been achieved.
This is what I will battle for and I'm not going to be fighting alone.

Please Don't Light up Blue for Autism

noreply@blogger.com (Sharon McDaid) — Fri, 28 Mar 2014 10:26:00 +0000

You mean well. I know you hope that by persuading your local council to bathe your town or city's most significant building or monument in blue light, that you are doing a good thing. You have bought into the notion that increasing "awareness of autism" will help your autistic children. But do you know where the notion of "light it up blue" originated? Are you aware how people who are themselves autistic feel about this particular campaign?

April 2nd has been marked as World Autism Awareness Day since the late 80's and in 2007 it was adopted by the United Nations. Light it up blue came along later; in 2010 it was set up by Autism Speaks, a huge and disreputable USA-based organisation. Autism Speaks seeks a world without autism, it does not support autistic people, but bullies and silences them. Autism Speaks regularly makes outrageously hurtful and damaging statements. Many in the autistic community call for a boycott of the organisation.

Blue is the corporate colour of Autism Speaks, that's it. Blue is not associated with autism for any other reason. When you lobby to light up blue or you "wear blue for autism" you are demonstrating your support of Autism Speaks the organisation, not of autistic people or their needs.

Autistic people and their allies are trying to get the word out about how damaging the light it up blue campaign is.

I ask that you take their views seriously and stop lighting up blue.

Autism Biomed Bullshit Booming in Ireland

noreply@blogger.com (Sharon McDaid) — Mon, 24 Mar 2014 22:00:00 +0000

I didn't expect that the promoters of uncontrolled and unethical experimentation on autistic children would be allowed to sell their services on RTE TV. Thanks to Suzy (who alerted me to all this stuff) I was able to catch the Morning Edition show of 21 March (segment starts at 57 minutes) when USA-based Great Plains Laboratory boss William Shaw was interviewed as an "expert in biomedical interventions" along with Karen O'Connor, boss of home-grown organisation The Child Development Centre. Shaw wasn't challenged despite claiming that they had "reversed" autism in many children with their treatments. The RTE reporter provided no balance or probing of these claims- just bovine acceptance. William Shaw's lab is one of those places where quacks send samples of urine and blood to be tested for the terrifying toxins that proper doctors and real hospitals can't find because they aren't using dodgy testing systems. The Child Development Centre provides some proper therapies like speech and language therapy and occupational therapy as well as rubbish like biomedical and craniosacral therapy and its shiny website contains a page full of jolly testimonials. There's no price list but I bet it all comes with a high price tag.

The TV show, as always with these things, showed a mum telling the miraculous story of her son's escape from the clutches of autism (tendencies) via music, biomedical therapy and craniosacral therapy. "Two years later," claims the reporter, "he's really reaching his true potential." Two years is a long time, and autism is developmental delay not developmental stasis. The Child Development Centre is being credited with all that slow, natural progress the child made in this lovely infomercial courtesy of RTE.

Today FM also promoted the Child Development Centre and their conference in an interview as bland as that on RTE. A mother describes how her perfect son was all of a sudden diagnosed with autism and "turned to a stone" but then they went to a herbalist and the Child Development Centre and were able to "bring him back" and now "he's not lost any more." He never was lost.

Hey Irish media, how about when you have a story on autism or some other condition, you seek out a person who has that condition. If you want an expert on autism, talk to an autistic.

Neither was I expecting to read a circa 2007 article on quack autism cures in the Irish Times a few days ago. Dear Maud this one is truly terrible. It (again) features the mother of an autistic kid who claims that following a particular regime rid her child of teh autisms. This time it's the services of Natasha Campbell McBride's and her GAPS diet that are being promoted and Geoff has written a wonderful post detailing just a few of her outrageous claims and dubious and potentially dangerous practices.

This article follows the tried and tested Autism Article^TM template as described below.


Don't stray from the template- sure who wants to know about the reality of life with autism!

It really astonishes me just how closely Adrienne Murphy sticks to the template I wrote in 2008!

But it's 2014 and we should not have to keep having these discussions. I'm tired of dismantling specious claims by unscrupulous hacks. Autism is nothing like that described by Murphy in the Irish Times. Autism is a genetically-based human neurological variant and NOT "the result of a complex intermeshing of degenerative diseases and comorbidities, largely created and exacerbated by environmental factors."

Autistic children are NOT "fully recovering" after biomedical treatment. Autism is not a disease though some people may have medical conditions as well as autism for which they must obviously receive proper medical treatment.

Murphy describes herself as "a lay expert" in autism yet fails to understand the most basic explanation for rising diagnoses.

Yet there's a final insult in the closing lines of the article: "Adrienne Murphy will be joking about autism as one of the performers in Stand Up For Humanity! Activists do Stand -Up Comedy for Charity."
After the disablism and inaccuracies of her article, I think it's for the best that I'm too far away from Dublin tonight to attend.

Is This Autism?

noreply@blogger.com (Sharon McDaid) — Mon, 18 Nov 2013 15:31:00 +0000

[Warning- in this post, written in support of the This is Autism flash blog, I've quoted some of the dehumanising language used by Suzanne Wright.]

I don't get to say what autism is. I'm not autistic though my thirteen year old son is. In learning how to parent him, I've met other autistic people, read their words and I've listened. I'm qualified to say what my son is like, how his awesomeness and autism intersect. I'm also authorised to say that the wretched "Call for action" edict by Suzanne Wright, co-founder of enormously wealthy and powerful, USA organisation Autism Speaks, is revolting, damaging and does not represent my son or my family. Nor does it tally with anything I have learned about autism in the past 11 years.

Autism Speaks Co-founder Suzanne Wright after some fantastical Photoshopping

"This is autism" Suzanne claims three times in a piece filled with falsehoods, bigotry, hate and a total negation of the existence of autistic adults. She does not represent my family when she says that we are "not living" but are merely "existing". Such hubris! She honestly thinks she can speak for all of us. She invents statistics; "2.3 million [US] dollars to care for one person with autism for their lifetime" and "Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help."

I'm offended and contemptuous. My son's existence isn't adding to a crisis, he's no national emergency. He's a disabled young person with his own challenges and talents and it's my job to raise him. Autism is part of the naturally occurring diversity of human experience. Unlike Autism Speaks, I don't want a world in which we "make autism a word that we only see in the history books."

Sure I am often worn out and I worry about and struggle to understand my children- all three of them, autistic and non-autistic, just as most parents do. Autism brings more challenges to the mix and I have had to battle with service providers and education departments to have my son's needs met. I've weathered the stares and comments of judgemental strangers. What hurts and exasperates me most of all though, is dealing with the perpetual dehumanising of people like my autistic son. He's a great kid- if you are ever lucky enough to meet him you'd see that. He doesn't deserve to have his very humanity constantly called into question.

Living, not just existing

I will do all in my power to prevent Autism Speaks from gaining a foothold in Ireland and the UK. I request that anyone who has ever contributed to that organisation now withdraw their support and that academic departments think very hard about whether to accept funding from them. An organisation that spreads this rhetoric of fear and hate ought to be shunned.

This is My Child

noreply@blogger.com (Sharon McDaid) — Tue, 20 Aug 2013 15:30:00 +0000

This is my millennium baby. He didn't develop along quite the same path as his older sister and most of his peers and was diagnosed with autism when he was two years old.

Ryan aged 2

As a toddler, he didn't speak but he communicated in other ways. Over time and with lots of help and teaching optimised to his way of learning he learnt to communicate more effectively. By the time he was 4, he was speaking in 2 to 3-word sentences.

Over the years, just about every single time we have been out and about together, people have taken a second look at him. Often it's because of what he's wearing. Ryan loves videos and stories. Most of his language comes from chopping up film scripts and slotting the pieces into place appropriately. He makes films of his own, He likes to dress up as his favourite characters. He's eccentric and catches eyes as he strides along with a red blanket wrapped around his shoulders.

Ryan aged 6, Robin Hood/Cowboy mash-up

Ryan aged 12 as Curtis the evil raccoon-sheep from Minecraft

People look because Ryan can be loud. He comes out with unexpected expressions. Sometimes he's angry and lashes out though it's very rarely physical and he holds back from hurting as best he can. Often he talks to himself and he moves in non-typical ways. He often livens up walking with a perfectly executed pirouette.

Most people look instinctively then go on about their day when they see that it's just a boy out living his life as he's entitled to. Rarely do people progress from simple curiosity to outright rudeness and the stares of strangers don't affect me. Over the years I've developed a force field that surrounds me and my boy and the people who try to catch my eye so they can register their disapproval are rarely successful. Some still try but I notice it much less than when he was younger. His disability is more apparent as he grows. He's not like typically developing teenagers.

Most people are lovely- they smile at Ryan, they show us kindness when we need it. Ryan abounds with kindness and concern for others. He deserves to have his place in the world, to be accepted and to have the few accommodations he requires to participate. He's my child and I wouldn't want him to be anything other than the creative, funny, loving and perfectly autistic boy he is.

Double Helix Water Autism Quackery

noreply@blogger.com (Sharon McDaid) — Thu, 27 Jun 2013 15:14:00 +0000

There's a new quackery promoter in town and he sent me the following email a few days ago. My thoughts are in red:

"Dear Sharon,

I have just been reading your blog I don't think so and wanted to introduce you to a new approach to working with Autism. Rather than send you a long email.
Don't leave me hanging, rather than send a long email you'll...?

I just wanted to say that I am new to the Autism community here in the UK allow me to represent the autism community in the UK and Ireland and say hello and welcome as I am working to try and connect with parents of Autistic children but not autistic adults? with a view to subsidising a trail oh here it comes of a water product that is having very positive outcomes with Autistic children. Wowee positive outcomes! That sounds like a good if rather vague achievement. And you're subsidising a trial? Does that mean people are actually being asked to pay to take part in a research project? Ethics fail.

I have attached a couple of pdf's for you to look at and look forward to hearing back from you when you have a moment.

Best Regards,
Jeremy Jones

Double Helix Water (UK) Limited

Company Number 8482978

Distributors of Double Helix Water for United Kingdom and Ireland"

(Double Helix Water-it's like DNA and water combined and doesn't that sound just awesome!)
Jeremy's email included a link to a science-y video all about the mysteries of water. Also attached was a slick marketing PDF which is what really piqued my ire. ~~I can't find a link (will forward PDF to anyone interested)~~ I uploaded it to Google Drive and here's the opening page:

Autism- ripping jeans and upsetting little kids since 1943

They're selling hope, the most marketable of all products. But they need first of all to frighten potential customers who, if they knew that autism is part of the naturally occurring diversity of human experience, wouldn't be hoodwinked by their pitch.

This document which I'm calling A New Hope goes on to proclaim that we're in the midst of a Global Epidemic, autism is a "medical and social issue that we can no longer afford to ignore. It has to be dealt with, and real solutions need to be
found."

This is followed up with an unreferenced "study" concluding that biomedical treatments are 81% safer and 60% more effective at "producing improvement" than drug treatments for autism, all based on parent consultations and the Autism Research Institute.

So much fail. To start:

who was "improved" and how?
drugs don't count as "biomedical treatments"?!
how was relative safety defined and measured
parental opinion is hardly objective.
the Autism Research Institute is a key player in the axis of autism-vaccine nonsense, it is a disreputable organisation promoting pseudo-scientific and potentially dangerous treatments for autism.
what exactly are the drug treatments referred to?

On to page 11 and more misinformation:

"Genetics Does Not Explain Autism
A Stanford University study of twins published last year found that genetics accounts for just 38 percent of the risk."

That's not what the study found- its authors say that the role of environmental factors has been underestimated. However an alternative analysis of their data concludes that it supports the findings of all previous twin studies and provides further evidence of the heritability of autism.

There is certainly no evidence for A New Hope's next claim, "The Majority Of Autism Is Caused By Environmental Factors."
After the usual autism-snake-oil pitch about gastrointestinal disorders and chemicals and toxins (oh my!) we're shown the solution- our saviour is so highly qualified the page is crammed with accolades:

Our hero

And this genius discovered something remarkable- stable water clusters. I think he means ice crystals. But anyway these, A New Hope claims, "have a remarkable effect on the Human Immune system."

What is it with quacks and non-standard word capitalisation?

On page 21 we learn that they use "Completely Safe thermal imaging" not harmful x-rays to examine the patient. But why would anyone even suggest using x-rays to discover anything about autism?!

Pink bad green good

So the magic water is administered and as the "startling" thermal image above of an autistic 7 year old shows, after only 20 minutes the child's temperature has dropped. Perhaps the heating was broken.

A New Hope ends with a pair of testimonials about how the magic water made a little boy and autistic teens smarter and healthier.

OK I'm convinced- where can I sign up to get the boy known as Duncan a supply of water clusters to make him more green and less autistic? Thankfully there's a FAQ on the website telling all. There's also the small detail of cost, they ask "participants to contribute $800 for this research project for three months". And they have the cheek to ask people to fork out that kind of money for water with a disclaimer that comprehensively states that participants can and should expect nothing for their money: "Nothing in this material is presented here as an effort to offer or render medical advice or opinions or otherwise engage in any type of medical practice."

This is a ridiculous con but some parents of autistic children will fall for it. It disgusts me that the people behind these companies are so lacking in standards, morals and ethics that they prey on people at a vulnerable point in their lives.

Mike directed me to a site dedicated to water quackery which other than homoeopathy, was to me, an undiscovered ocean of woo. Dr Lo and his Double Helix water gets a special mention.

And Allan sent me a link to an inadvertently funny video about emotional water- with ice crystal formation supposedly dependant on exposure to words.

What would happen if the water was exposed to these words?

Why She Stayed

noreply@blogger.com (Sharon McDaid) — Tue, 18 Jun 2013 15:56:00 +0000

I posted on Facebook about the photos of Nigella Lawson having her neck squeezed by Charles Saatchi and called him a typical abusive creep for making a statement minimising his behaviour by describing it as merely a "playful tiff". One of my friends said "I just cannot understand why such a smart, beautiful and independently successful woman would have stayed with him throughout torment like this!"

I thought about this and decided to respond here instead of on Facebook.
I don't know why she stayed, only she can answer. But I would be very surprised if at least some of the reasons I shall list don't apply.

So here is why she and people like her may stay:

It started out so slowly and insidiously that she didn't realise it was abuse until she was married or much later.
She thinks that she doesn't deserve better.
She's afraid, confused, guilty and burdened by obligation.
He's hurting and needs her love. She can heal him, it's her duty to just keep giving.
She thinks she's to blame for most of what goes wrong- if she could stop being so emotional and weak things might improve.
She sees him behave properly in every other situation except with her- it's her fault.
She minimises incidents, explosions, hurts and humiliations as soon as things get on a more even keel.
She feels embarrassed, thinks she overreacts, knows she's not perfect, thinks of herself as too argumentative and combatative.
She finds it hard to keep track of what happens.
She still feels love for her partner- it may turn out that the emotion could more accurately described as pity.
She's frightened of change, of things getting even worse if she tries to end the relationship.
She can't imagine how things would be if the marriage ended.
She's afraid of being alone.
She's concerned about the impact on her children.
She's afraid of what a man with wealth and power could do to her if she tries to leave him, how he could affect her reputation or career. Will he start telling people that she's mentally ill or unstable?
Sometimes it's fun being with him, she remembers good times they shared, sometimes he acts as though he might actually love her.
He might apologise, promise that he loves her, he'll change and do whatever it takes to make things ok, but that he can't do it without her.
Stockholm syndrome is real- the person causing the hurt may then take care of her, increasing the confusion, making her dependent on him and feeling like she couldn't possibly cope without him.
His promises keep lighting the hope that things will improve. Hope takes a long time to die.
Ending a marriage goes against all her values and principles, she thinks that she must fight harder to make it work, give it one more go, try to accept things or be more understanding.
Ending a marriage means admitting defeat- she must accept that she failed to either pick the right partner or to make a marriage work. She might feel shame especially if she's the only person this has happened to in her family. She might feel shame that people will blame other difficulties in her life for making marriage impossible.

All kinds of women and men can be in abusive relationships. Thankfully sometimes she recognises what's been happening, fights the denial, crushes false hope and with a heck of a lot of help, she gets out of it and makes a far better life without the abusive jerk. But it never stops stinging slightly when people ask "why did she stay?"

Belfast Telegraph Article Online

noreply@blogger.com (Sharon McDaid) — Thu, 17 May 2012 13:13:00 +0000

Quick post to share a link to the online version of Belfast Telegraph article about Ryan and me.

Ryan has autism but he's adorable and makes me laugh every day

noreply@blogger.com (Sharon McDaid) — Wed, 09 May 2012 15:55:00 +0000

There was an article about Ryan (aka Duncan) and me in yesterday's Belfast Telegraph. It's based on a piece I sent in to promote the NAS. I managed to get lots of my personal philosophy on autism in there and I'm well pleased with how it reads. It's not online yet so I scanned the article to share here.

From Belfast Telegraph autism article, May 8, 2012

From Belfast Telegraph autism article, May 8, 2012
Click on the picture to enlarge.

And my life is now complete, I have shared a page in a newspaper with Rocky.

Awareness, Acceptance, Action

noreply@blogger.com (Sharon McDaid) — Mon, 02 Apr 2012 11:18:00 +0000

Today is World Autism Awareness Day and marks the start of Autism Acceptance Month.
Awareness is a useless, nebulous concept. Only acceptance, action, understanding and support matter. I would like to see the day rebranded as Word Autism Action Day.

I oppose the "Light it up blue" campaign for autism awareness as it is an Autism $peaks backed movement calling for funds to "research into the causes, prevention, treatments and a cure for autism". I'm not going to support an organisation dedicated to eradicating autism.

However I am as impressed by the UN Secretary-General's message for the day as I am critical of that from the Vatican. Leaving aside the unfortunate but ubiquitous puzzle-piece imagery illustrating the piece, Ban Ki-moon has a good understanding of autism and the needs of autistic people. He realises that autistic children become autistic adults, a simple enough concept you may think but one so often ignored:

"Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement."

I applaud all of his message but particularly like:

"Greater investments in the social, education and labour sectors are crucially important, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents
[...]
World Autism Awareness Day is meant to spur such action and draw attention to the unacceptable discrimination, abuse and isolation experienced by people with autism and their loved ones.
[...]
Let us all continue to join hands to enable people with autism and other neurological differences to realize their potential and enjoy the opportunities and well-being that are their birthright."

It's not what we have now but we can create this world. We autistic people, parents, friends and supporters, those who are accorded the label of allies; we are tough, tireless and committed. OK, we are in truth often exhausted, overwhelmed, frustrated and worn down but we keep on going because we have to. We either know what needs to happen or know how to listen to those who have personal experience. We can advise, campaign, advocate and shake things up until it's right. We can support each other, learn from each other and keep working on advancing the civil rights of autistic people.

Today as on everyday, my boy will be happily autistic. I love him to his core, I don't wish a part of him away because that would leave a different child, not the one I gave birth to and have raised for almost 12 years. Today and always, I accept autism.

Vatican's Autism Message

noreply@blogger.com (Sharon McDaid) — Sun, 01 Apr 2012 21:37:00 +0000

They've never heard of the social mode of disability down at the Vatican. This is a breathtakingly backwards view of autism. Archbishop Zygmunt Zimowski, get in touch and I'll set you straight on a few things.
Here's his take on autism:

"On the occasion of the Fifth World Autism Day, the Church intends to express her nearness to those who are burdened by the weight of this profound suffering. In large measure still to be explored, autistic spectrum disorders constitute, indeed, for those who are affected by them, a grave alteration of behaviour, of verbal and non-verbal communication, and of social integration, with a wide-ranging effect on the normal development and evolution of the personality."
(Emphasis mine)

WHAT!? Such disdainful, othering language. The problem, Zimowski thinks, are the disordered, abnormal "gravely altered" autistic people.

I wonder if he ever knowingly met an autistic person or did he just ask Tony Humphreys what they're like? If he spent any time connecting with a few autistic people himself, he might realise how wrong he is when he says:

"In this pathological movement of self-envelopment and closure to the other and the external world, the Church sees as impelling the task of placing herself at the side of these people – children and young people in particular – and their families, if not to breakdown these barriers of silence then at least to share in solidarity and prayer in their journey of suffering. Indeed, this suffering, at times, also acquires features of frustration and resignation, not least because of the still scarce therapeutic results. These frustrations are to be seen, in particular, in families which, although they look after these children with loving care, experience repercussions as regards the quality of their own lives, and are often, in their turn, led to be closed up in an isolation that marginalises and wounds."

Such florid nonsense.
This is a 45 year old Bettelheim-era and utterly discredited vision of autism. Autism doesn't mean closure to the outside world. And what barriers of silence is he talking about? I know some autistic people who don't speak but none who are silent. Not all autistic people are children. Not all families with autistic members are closed up, marginalised and wounded.
Zimowski continues:

"The Church and all people of good will thus feel committed to being ‘travelling companions’ with those who live this eloquent silence, which calls upon our sensitivity towards the suffering of others, following the emblematic example portrayed in the gospel parable of the Good Samaritan."

"Eloquent silence". Oh wow.

It's too awful to go through this line by line but here's a selection of words this pillar of the Catholic Church uses to talk about autistic people like my wonderful son. To the archbishop they have:

"a pathology which affects more people in numerical terms than could have been imagined only a few years ago"
"the gravest and most devastating disability"
"a grave psychological disturbance"

And they are:

"people with autistic disturbances"
"enveloped in the mystery of silence"
"a living and transparent sign of the presence of the Resurrected Christ in the world."

No Archbishop, they are people living with a disability in the same real and right-now world as everyone else. They deserve, like all people to be treated with kindness, respect and decency. They do not require your pity or your depction of them as disturbed and mysterious ciphers. They need to be listened to, understood and accepted. It's not difficult.

Soaring Autism Children

noreply@blogger.com (Sharon McDaid) — Sun, 25 Mar 2012 14:14:00 +0000

Soaring autism; I envision loads of autistic children running down a grassy slope, arms outstretched, pretending to be aeroplanes. A few who enjoy a good spinning session could be helicopters instead. But sadly that's not what this post is about.

Last week, several newspapers published articles on increasing numbers of children in schools having diagnoses of autism. Among these were:

Daily Telegraph: Number of children with autism soars by more than 50 per cent in five years
Daily Mail: Number of schoolchildren classified as being autistic soars by 56% in five years
Irish Independent: Number of children with autism soars by more than 50pc in five years
Parentdish: Some parents claim their kids are autistic to gain advantage at school, claims expert

I assume these identical articles, all laden with wailing and the gnashing of teeth due to the burden of the dread autism, were based on press releases from either the group featured prominently in each, The Centre for Real Education (CRE) or the contrary academic Frank Furedi who's personal views on autism are accorded much more weight than they deserve.

The NAS has a useful, detailed and well referenced article about autism numbers and concludes "it appears that a prevalence rate of around 1 in 100 is a best estimate of the prevalence [of autism] in children".

However these articles all open with a discussion of how the number of children in schools diagnosed with autism has doubled in the past and with current figures of approximately 1 in every 125 pupils. I fail to see the problem. Autism is a common condition. It was under-diagnosed for years, the criteria were much stricter so that many people who have a disability were not getting enough support. Now the criteria have been widened, there is better recognition of the condition and more children are getting accurate diagnoses.

Furedi is quoted in each of the articles as saying,

"It is unlikely to be a genuine unprecedented increase in autism, rather an institutional use of this condition to allow people to get easier access to resources. This activity ends up trivialising what is a very serious condition for some children."

That's the opinion of a man with zero expertise in autism. He presents no facts to back up his claims and he can quite easily be ignored.

The CRE spokesperson says,

"Obviously children with autism need special treatment. But the rapid increase does suggest that perhaps the figures should be looked at again.
Children should not be classified as having special needs too easily. The rise should be examined closely because it has a knock-on effect for teachers, schools and the pupils themselves."

All children need special treatment. Children with a disability require accommodations to give them access to a good individualised education adapted to maximise their learning. This happens for some people but most autistic children in schools are not getting the support they deserve.

The CRE philosophy on education is set out here in their manifesto for common sense.

That title alone tells me much about how this group sees the world. They favour selective education, "meaningful punishment" for bad behaviour, traditional values, parental choice (for the kind of parents they approve of) and demand that lots of current progressive practices "should be halted." They want more emphasis on facts and knowledge and less on skills. They demand that art, music and literature lessons concentrate on approved classics.

They have a section on "Special Needs"

When the proportion of pupils with genuine special needs is probably only around 5%, the educational establishment's acceptance of 20% or more is intolerable.[5]

Recommendation: Immediate steps should be taken to reduce the artificially high percentage of 'special needs' by ensuring that only those that are genuine are specified – and properly catered for. The widespread practice of exaggerating special needs to gain additional funding should be halted.

Clearly I checked out reference [5] to see where those numbers come from- and was baffled to find that it was an old article by Minette Marrin in the Daily Telegraph. For real! This is what counts as reference-worthy to the CRE.

Minette Marin is one of those click-baiting troll columnists and I've discussed her before after her vicious and hateful piece calling babies with Down Syndrome and their families "damaged babies" and "damaged families". The only other person in the CRE list of references with whom I'm familiar is Melanie Phillips.

This is speculation presented with no evidence that the needs of disabled children are being exaggerated. The CRE are not worth listening to.

The NAS spokesperson makes a typically sensible contribution to the discussion:

"We know that with accurate diagnosis the right support can be put in place so that children with autism can reach their full potential. It’s very likely that all teachers and school staff will come into contact with children with autism at some stage during their teaching career, so it’s vital that they receive quality training and strategies to support these children in the classroom."

As usual the comment sections on these articles descend into a mire of anti-scientific, disablist nonsense.

I can't imagine why the CRE and Frank Furedi were considered worth quoting on these matters. I wish the papers would look more closely at the people sending them stories and examine their agendas.