Autism, Asperger's Syndrome and Adults

What exactly has improved for adults who suffer from autism or Asperger's Syndrome in 2011?

noreply@blogger.com (Matthew) — Sat, 31 Dec 2011 19:30:00 +0000

I will answer the question, but unfortunately will offend some people in the process. The Welsh government with its Strategic Action Plan, employment ambassador for Wales, RCT council, NAS Cymru, and maybe others I've forgotten, have all played their part and promised much for adults with an ASD. I can only speak for AS and from my own personal experience, and I can honestly say that nothing whatsoever has improved in my life as a result of the work conducted by the above mentioned interested parties! I'm really sorry that I can't report anything positive for 2011, but this is how I feel. Presumably others in a similar position, as I regard myself as a typical person with AS, have experienced likewise. Let's hope something, however small, will actually change in our lives for the better in 2012.

Are scientists and engineers more likely to have children with an ASD?

noreply@blogger.com (Matthew) — Wed, 30 Nov 2011 23:55:00 +0000

Psychologist Simon Baron-Cohen, at the University of Cambridge, believes that parents that work in science and technology i.e. whom are classed as "systemisers" - good at putting things in order - could possibly be more prone to producing children with an Autism Spectrum Disorder (ASD), i.e. autism or Asperger's Syndrome.

If you wish to find out more then read these two articles:

"Are those working in science more likely to have a child with autism?" and "Scientists and autism: When geeks meet."

Adults with autism or Asperger's Syndrome and DLA.

noreply@blogger.com (Matthew) — Mon, 31 Oct 2011 20:37:00 +0000

Adults with autism or Asperger's Syndrome could be eligible for Disability Living Allowance (DLA). It's a monthly payment and the amount depends on the severity of the condition. A comprehensive form needs to be completed, but well worth the effort considering the benefit if successful.

For full details click on the following link, which will take you to The National Autistic Society website: DLA: guidance for adults with an ASD completing the form.

Has anyone a story they would like to share?

noreply@blogger.com (Matthew) — Fri, 30 Sep 2011 22:55:00 +0000

If any readers of this blog have a story they would like to share with the rest of us then by all means please do so. It can be anything at all, positive or negative, but obviously relating to autism or Asperger's Syndrome. Just send me the details and I'll do the rest.

As usual, if anyone has a constructive comment then please let me know.

Welsh teenage artists win UK competition.

noreply@blogger.com (Matthew) — Wed, 31 Aug 2011 18:30:00 +0000

Further evidence that people with autism or Asperger's Syndrome can indeed be creative, despite views to the contrary. Young people and adults have so much to offer society in a wide variety of subjects, so let's give them the opportunities they so rightly deserve!

Here's the full story:"Two teenage artists win accolades in national competition".

How should Asperger's Syndrome be classified?

noreply@blogger.com (Matthew) — Sun, 31 Jul 2011 15:28:00 +0000

Should Asperger's Syndrome just be simply allied with autism or have its own distinct classification? Psychiatrists are, at present, unable to agree and the debate continues.

For the full story, please read: "Asperger Syndrome Classification and Autism Rates".

'Genes differ' in autistic brains.

noreply@blogger.com (Matthew) — Thu, 23 Jun 2011 19:41:00 +0000

According to researchers, the brains of people with an ASD are chemically different from those whom are neurotypical (NT) i.e. don't have an ASD.

Please read "Autistic brains' 'genes differ'" for more details.

600,000 adults could have an undiagnosed ASD.

noreply@blogger.com (Matthew) — Tue, 31 May 2011 20:44:00 +0000

As disturbing as this statistic is, I'm not that surprised. I was fortunate enough to have been diagnosed in 2002, but common sense (admittedly not proof) dictated that there must be many adults that have not been fortunate by receiving a diagnosis.

Please read the following two articles if you are interested in finding out more:

600,000 adults could have autism that has gone undiagnosed.

Thousands may have undiagnosed autism.

Various ASD articles (I'm so generous!).

noreply@blogger.com (Matthew) — Sat, 30 Apr 2011 21:11:00 +0000

Hi everyone,

Today, I thought I would do something slightly different; I enjoy living adventurously! (touch of sarcasm).

I have a few interesting stories to share with you, so thought it best to place the links together rather than write a separate post for each. These articles are some of the best from my ever growing collection of ASD information. I trust you will find them informative:

Aspies are far from unemployable.

What I'm really thinking: The person with Asperger's syndrome.

There's something different about dad.

First Welsh specialist college for students with Asperger's syndrome opens its doors.

I Discovered I was Autistic when my boy was Diagnosed.

Vitamin D for Overall Health.

ASD employment ambassador for Wales.

noreply@blogger.com (Matthew) — Wed, 30 Mar 2011 20:22:00 +0000

Did you know that an ASD employment ambassador for Wales was announced last year? No? Neither did I! Even though I try my utmost to follow events relating to ASDs, as per usual I'm not up-to-date with developments; despite repeated requests to be kept informed and promises made to that effect, by people whom hold privileged positions.

Anyway, if you would like to read the full story, click on: "Moves to help the most vulnerable in our society starting to bear fruit", and all will become clear.

DLA to be reformed!

noreply@blogger.com (Matthew) — Mon, 28 Feb 2011 21:00:00 +0000

The government is looking into reforming Disability Living Allowance (DLA), which, according to reliable sources, could cause financial hardship to many, if the changes are made. I don't pretend to understand a great deal about it, consequently I will leave it to those whom are more conversant with the subject.

You may be pleased to know that the Welsh Assembly Government is already involved in the DLA reform debate. Therefore, if you go to: "The Broken of Britain" blog and read: Wales Opposes DLA Reform and other "posts" all will be revealed.

New report by NAS highlights lack of support for adults with an ASD.

noreply@blogger.com (Matthew) — Thu, 20 Jan 2011 21:41:00 +0000

The NAS Cymru has recently released a new report: "The life we choose: shaping autism services in Wales”, which was also made public in the Western Mail's Health section on Monday the 17th: "Desperate lack of help for autistics." Actually, basing my opinion on my own experience with Asperger's Syndrome (AS), I thought the findings were somewhat too positive! However, the statistics only included the input from 400 people, which I think is probably too small a sample when you consider that there are thousands of people affected by ASDs in Wales. Furthermore, is it possible that the statistics are slightly difficult to interpret due to the fact that autism and AS are grouped together? Is it just feasible that autism sufferers receive more support than AS sufferers? I'm not a statistician, just using common sense. I'm not criticising the report, but trying my best to understand the findings. I think it would be beneficial to all if someone from The NAS Cymru could comment on my thoughts and hopefully clarify the situation; I'll see what I can do.

(Updated 4th February):

On the 20th January, I received an email from Rhodri Davies, NAS Cymru:

Dear Matthew,

I hope you are well. My name is Rhodri Davies, PR and Campaigns Officer for the National Autistic Society Cymru. We have spoken before over email, and you may remember that we worked on a story together in February 2009 which appeared in the Rhondda Leader, which discussed your blog, and our I Exist campaign.

I'm not sure if you managed to read the article about our new report, titled the Life We Choose in the Western Mail Health section on Monday the 17th of January. If not, here is a link to it: http://www.walesonline.co.uk/news/wales-news/2011/01/17/desperate-lack-of-help-for-autistics-91466-27997766/.

Many thanks for taking part in the article. You make a very good point that many people with autism and Asperger syndrome in Wales will not be able to take part in pieces of research like this, as a lack of support has left them completely isolated from organisations which can help them, including the NAS. Although hundreds of people that took part in our research, there are many more who aren't able to have their voices heard.

I am sorry you did not know how we conducted our research. I can clarify this. During 2010, we held a two focus group events in St.Asaph, north Wales, and in Cardiff. In both of these events, a total of 9 focus groups were held. People with autism and Asperger syndrome, their parents and carers, and professionals, all took part in these. Following this, we made a survey available online for people with autism and Asperger syndrome, and their families, which over 400 people completed.

We made our members and campaigners aware of this work over email. I have checked, and we currently have two email addresses for you – xxxx and xxxx. Please could you let me know which email address you are likely to use most often, so that I can ensure all future correspondence from the NAS is sent to this?

Should you wish to read the Life We Choose report, you can download it from www.autism.org.uk/thelifewechoose. If you have any comments on it's contents, or would like to add anything based on your experiences, please let me know over email on rhodri.davies[at]nas.org.uk, and we can incorporate that into our future policy and campaigns work.

Finally, please feel free to write a blog post on the report. If ever you have any ideas on future media items you and I could work together on, please let me know.

Best wishes

Rhodri Davies

Rhodri Davies
Swyddog PR ac Ymgyrchoedd / PR and Campaigns Officer
Cymdeithas Genedlaethol Awtistiaeth Cymru / The National Autistic Society Cymru
029 20 629 314
07976187011
rhodri.davies[at]nas.org.uk
twitter.com/NASPressteam

I replied on the 21st:

Hi Rhodri,

Yes, I remember you, hope everything is well.

I've read your recent report and the Western Mail's article, both of which were very interesting.

I'm glad you appreciated my input, it was never my intention to find fault with The NAS Cymru report, but just to offer constructive criticism; we are all working on the same team.

I've written a blog post concerning your report, which I hope you will like. I've raised a couple of points, which you might agree with or not, but if you could respond to my thoughts, I, and no doubt others, would be very grateful. You could either leave a blog comment directly or reply to this email and I'll place it on my blog on your behalf.

Lastly, please note my new recent email address: xxxx

Looking forward to receiving your comments and if I can think of any future media items I'll certainly contact you.

All the best,

Matthew.

On the 31st, due to no reply after 10 days, I thought it prudent to try again:

Hi Rhodri,

Did you receive my email on 21st January? Copy of my email below:

And on the same day:

Dear Matthew,

Thanks for your email. I did receive it thankyou, and also read your blog post. Thanks also for taking the time to write about our report.

I had planned on writing a response on your blog to that post. Would you be happy with this?

Best wishes

Rhodri

And my reply on the same day:

Hi Rhodri,

Yes, if you could respond to my blog post I, and no doubt others, would be very grateful.

Thanks,

Matthew.

Government must do more to help adult ASD sufferers. (NAS)

noreply@blogger.com (Matthew) — Fri, 31 Dec 2010 21:53:00 +0000

According to The NAS, a third of adults diagnosed with an ASD are without a job or benefits: "Government must ensure adequate support for people with autism."

Before reading the above short article you might want to read an earlier "post" first, which I wrote in November 2009: "6,000 Welsh autistic adults are struggling to survive!"

Still no help for adult ASD sufferers.

noreply@blogger.com (Matthew) — Tue, 30 Nov 2010 23:55:00 +0000

Why is there still no assistance or advice for adults who have been diagnosed with an autism spectrum disorder (ASD)? I know we, in Wales, have an ASD Strategic Action Plan, but why is everything progressing so slowly? Why don't we, the public, hear anything about the Plan? It always seems to be the same people who are kept informed on developments; what about the rest of us? I've managed to secure some information, as posted on this blog, but nothing is easily obtained and only then when I'm proactive and "badger" people for details, then nothing more is heard from them; It's really difficult and very time consuming! People are contacting me for information concerning help for adult ASD sufferers. What do I tell them? I'm in the same position; I feel disappointed, annoyed and frustrated with the whole affair! I really wish I had something positive to write about but, unfortunately, this is exactly how I feel at the present time!

Simple scan could detect ASDs, but what then?

noreply@blogger.com (Matthew) — Sun, 31 Oct 2010 17:51:00 +0000

A simple 15 minute scan could help doctors to diagnose autism and Asperger's syndrome. Obviously this is extremely encouraging news, but what happens after diagnosis? There is still a dearth of advice and support for adults who suffer from autistic spectrum disorder's (ASDs) in Wales.

Please read the following two Guardian articles for all the details: "Autism can be diagnosed with brain scan – study" and "Autism diagnosis is only the first step."

Hwyl.

Jobcentre Plus still ignorant about Asperger's Syndrome! (updated: 29th Dec.)

noreply@blogger.com (Matthew) — Thu, 30 Sep 2010 15:49:00 +0000

Before I proceed, you might want to read my original "post", "Jobcentre Plus & their lack of ASD knowledge!"

On the 14th September, I had an interview with a Disability Employment Advisor (DEA), having arranged the appointment the previous day. Unfortunately, in my particular experience, nothing positive has changed concerning Asperger's Syndrome (AS) in 6 years! The DEA wanted to know how long I have suffered from AS, unaware that it's actually a lifelong condition! The point being that he knew absolutely nothing about AS. Incidentally, this was the same DEA that I saw in 2004. Obviously I'm not blaming the DEA, my grievance is with the system, the DWP and, of course, past and present governments. I'm totally amazed, disappointed and disgusted that Jobcentre Plus DEAs are still unaware about what AS actually is. Why has this been allowed to continue? Why are DEAs not properly trained? My next port of call will be the DWP. When I receive a reply, you'll be the first to know.

(Updated 8th November):

Today, I emailed Jobcentre Plus concerning the above problem. Obviously, I'll let you know the outcome.

Incidentally, it has recently occurred to me that people whom suffer from a multitude of disabilities could also be experiencing similar problems with Jobcentre Plus. Consequently, if there are people reading this who are dissatisfied then please leave a comment on this blog or contact me via email (visit my profile). I really am unaware about whether this problem is widespread or not, but surely this cannot be affecting just myself. Anyway, if indeed there is a problem then perhaps we could unite in a common cause and change the system.

(Updated 25th November):

Today (25th), I emailed Jobcentre Plus for the purpose of acquiring the whereabouts of the reply to my above email. So much for government department promises! This is a copy of today's email:

Sir/Madam,

It has been over 10 working days since I sent my query but, unfortunately, no reply has yet been received. When can I expect a positive response?

Mr ******.

(Updated 20th December):

On the 9th December, I received a reply to my, above, email:

Dear Mr ******

Thank you for the emails that you have sent to Jobcentre Plus. Your emails have been passed onto me for my response as Customer Relations Manager for Jobcentre Plus in the South Wales Valleys. In your emails you described the problems that you have experienced with our advisory services at Treorchy Jobcentre.

Unfortunately there has been a delay in your emails being passed onto me for my investigation and response. I would firstly like to apologise for this delay.

My investigation into this matter is taking longer that anticipated, however I can confirm that my investigation is currently on-going and that I will respond to you in full as soon as my investigation is complete.

If you would like to discuss this matter further you can contact me by return of email, on telephone number 01443 484748 or by writing to me at the below address.

Jason Davies
District Customer Relations Manager |South Wales Valleys Jobcentre Plus | Customer Service Directorate | 2nd Floor Oldway House | Broadway | Pontypridd | CF91 5AQ | Tel 01443 484748 | 4748 | Fax 01443 484773| Tex Box 0845 608 8551 www.dwp.gov.uk

My response on the 10th:

Dear Mr Davies,

Many thanks for your email, I look forward to hearing from you in the near future when your investigation is complete.

Mr ******.

(Updated 29th December):

On the 22nd, I received an email reply from Jason Davies, for which I'm very grateful. I will leave it to you as whether you think Jobcentre Plus actually know anything about Asperger's Syndrome or not:

Dear Mr ******

Further to the email that I sent to you on 9 December, I am writing to you with my full response in relation to your experience with our advisory services at Treorchy Jobcentre.

I was concerned to read of your experience, and as such along with the manager of Treorchy Jobcentre I have conducted an investigation into the circumstances leading up to your complaint.

It may help if I explain that all Jobcentre Plus Disability Employment Advisers (DEA) are required to undertake training in order to carry out their advisory role. This training covers a diverse range of topics in how to help and support customers suffering from health problem or disability. The training also includes topics specifically relating to customers diagnosed as having an Autistic Spectrum Disorder (ASD), including Aspergers Syndrome.

In his training, your DEA learnt a background to Aspergers Syndrome, how it could and can affect customers in the workplace, implications for work related adviser interviews, employment goal identification problems, job search problems, problems around returning to work and what help and support may be required, sources of employment assessment, and support and employment support organisations.

I can confirm that all Jobcentre Plus advisers are trained using the PIGEEP structure for their interviews (Prepare Introduction Goal Explore Evaluate Plan), and aim to concentrate on overcoming specific barriers with customers rather than addressing medical issues directly.

Since receiving your feedback your DEA has discussed Aspergers syndrome in detail with our work psychologist in order to gain an improved understanding of your condition. He has also visited the National Autistic Society's website to research sources of support for customers living with an ASD. I can confirm that this information has also been passed onto the other DEA’s within our district in order to heighten their awareness ASD’s and Aspergers Syndrome.

I would like to take this opportunity to thank you for writing to us about your experience, and am sorry that you feel that you have not received the level of service that you have a right to expect. Feedback such as you have provided is extremely valuable and allows Jobcentre Plus to review the service it provides and make changes where appropriate.

If you would like to discuss this matter further you can contact me by telephone on 01443 474847, by writing to me at the below address or by emailing me at jason.davies1@jobcentreplus.gsi.gov.uk

Yours sincerely

Jason Davies.

Great news concerning Specialisterne in Scotland.

noreply@blogger.com (Matthew) — Tue, 31 Aug 2010 22:03:00 +0000

On the 4th August, I received an email from CEiS concerning Specialisterne setting-up business in Scotland for the purpose of employing people with autism or Asperger's Syndrome. Let's ask the Welsh Assembly Government if it can fund something of a similar nature in Wales!

Here's the CEiS email, including a website link for further information:

We are writing in follow up to your previous enquiry made to us at CEiS regarding the development of the Specialisterne business model in Glasgow.

We are delighted to be able to announce today that Specialisterne Scotland has now been launched as a company.

Full details of the launch including details of proposed information sessions and the application process for potential trainees can be found at the following web link: http://specialisternescotland.co.uk/

We thank you for your interest in the development of this exciting new social enterprise.

Yours sincerely

CEiS

New ASD social group for adults in RCT starting soon. (updated: 25th August)

noreply@blogger.com (Matthew) — Sat, 31 Jul 2010 20:33:00 +0000

The ASD action plan for RCT has recommended that an adult social group is needed in RCT, and it is hoped that the first group gathering could start shortly. If you would like to share your thoughts or feelings about having such a group, for example, any ideas on suitable meeting venues or activities then that would be very helpful. If you have any constructive comments whatsoever it would be greatly appreciated; send them to me and I'll forward them to the appropriate person at RCT. Thanks.

(Updated: 25th August):

Here's the advert that RCT are using for the above Social Group:

Social Group for people with Asperger Syndrome.

Do you have or know anyone with Asperger Syndrome?

Would you/they like to meet others with similar life experience?

Would you/they like to be part of a social group, to do things with people who understand Asperger Syndrome?

If you are 18 years of age or over why not come along to our first meeting, to find out more about the group and what it can offer.

Where: Room 3, YMCA Buildings, Taff Street, Pontypridd CF37 4TS.
When: Thursday 9th September at 7.00pm.

Carer’s, family members and friends welcome.

(end of advert)

(For more information please contact Caroline Wells, telephone 01443 668839 or email: caroline.a.wells[at]rhondda-cynon-taff.gov.uk)

NAS join forces with Remploy.

noreply@blogger.com (Matthew) — Wed, 30 Jun 2010 20:49:00 +0000

The NAS and disabilities employment organisation Remploy form a partnership to help people with autism or Asperger's Syndrome find and retain employment. Anything that supports people whom suffer from an ASD has to be great news.

Full details are here: "NAS and Remploy work to improve job opportunities for people with autism."

Positive aspects of Asperger's Syndrome.

noreply@blogger.com (Matthew) — Mon, 31 May 2010 17:51:00 +0000

Although there's negative aspects associated with Asperger's Syndrome there's also much to be celebrated. Furthermore, the positive side of the disorder is increasingly sought after by employers, which has to be encouraging and exciting.

Please read: "The Flip Side of Asperger's. Mild form of autism balances social awkwardness with focused intensity."

Please feel free to leave any constructive comments.

Explanation from RCTCBC regarding ASD Action Plan (Part 2). (updated: 5th May)

noreply@blogger.com (Matthew) — Thu, 29 Apr 2010 19:09:00 +0000

This "post" is a continuation of: Explanation from RCTCBC regarding ASD Action Plan; you might want to read that particular “post” before this one.

On the 26th March, I wrote an email to Shelly Stephens (RCTCBC):

Annwyl Shelley Stephens,

It has been six months since our last correspondence, which is rather disappointing; I was expecting someone to contact me, as promised. Consequently, I thought it prudent to contact you again to ascertain the position regarding the draft Action Plan which had been sent to the Welsh Assembly Government for their consideration and comment. If you could update me shortly with the relevant details I would be very grateful.

Mr ******.

And on 29th March:

Dear Mr ******,

I apologise that you have not been contacted. I have forwarded your e-mail on to the relevant officer and ask that they contact you as soon as possible.

Should you require anything further, please let me know.

Kind Regards

Shelley Stephens

Secretary to the Leader and Deputy Leader
Cabinet Support Unit

Yesterday, 28th April, this from Mr Tony Isingrini (I assume he's the “relevant officer” mentioned above):

Hi Mr ******,

First of all can i apologise for the inordinate delay in responding to you(reference the attached letter to you dated september 2009).On this occasion there has been an unfortunate breakdown in the internal communication arrangements which has regrettably led to your helpful enquiry not being responded to until long after it should have been.

I can though reassure you that the Action Plan is not set in stone and will continue to be refined to take account of changing circumstances and the views of people who have an interest in the continuing development of the Action Plan.

Could i therefore suggest that myself/Alison Willis meet with you at 11.30am on 24th May 2010 in the RCT County Borough Council Offices in Ty Elai , Dinas Isaf East, Williamstown, Tonypandy,CF 40 1NY to discuss your views on the Plan.There is now a summary version of the Plan that has been printed that i can get to you(if you have not seen this already)-if you wish to receive a copy please let me have your address etc and i will arrange.

Could you therefore please confirm whether the above date/time and venue is convenient,if not we can come back to you with some alternative later dates.

I look forward to receiving your response.

Many Thanks

Tony

Today (29th), I responded with:

Dear Mr Isingrini,

Unfortunately, this is the second time that there has been a “breakdown in the internal communication arrangements”; perhaps existing operating procedures need to be modified.

Regrettably, due to my Asperger's Syndrome, I'm unable to accept your kind offer of a personal meeting; people who suffer from an ASD are not exactly renowned for their social confidence.

I'm pleased to hear that the Action Plan is still in the development stage and that input from the public is now being sought; I'm sure there are many people in a similar situation as myself, including family members, who would welcome an opportunity to contribute to the Plan. Consequently, I would be very interested in obtaining a copy of the summary version of the Plan (preferably in electronic form, if possible).

Many thanks, looking forward to hearing from you soon.

Mr ******.

(Updated: 5th May):

The following correspondence is all related to the 30th April:

Mr Isingrini's reply:

Hi matthew

Thank you for your response-appreciate the concerns you raise.

We will do everything we can to reduce the potential for this sort of communication breakdown occurring in future.

Although i am sorry that you feel unable to meet,i do respect your reasons for not wishing to do so.

However,i will be more than happy to arrange for the summary plan to be sent to you,either electronically if this is possible,or if not,directly to your home.We will organise this as soon as we can.

Please do not hesitate to contact me again though to communicate any views you may have or should you wish to have any issue(s) clarified.

Many Thanks

Tony.

My reply:

Hi Tony,

I've already received the "summary plan" from Caroline Wells, for which I'm very grateful. When I've digested the document I'll email any suggestions to you.

Many thanks,

Matthew.

Email from, Caroline Wells:

Dear Mr ******

Tony Isingrini has asked me to forward to you a copy of the Autism Spectrum Disorder Multi Agency Action Plan and also a copy of the Autistic Spectrum Disorder Directory of Services. Both of these documents are attached for you. Please let me know if you would like me to send these documents to you by post.

Kind regards
Caroline

Caroline Wells
Development Officer
Rhondda Cynon Taf Parent and Carer Network
Heddfan
Ilan Avenue
Rhydyfelin
CF37 5PN

Tel 01443 668839.

And my reply:

Hi Caroline,

These documents in electronic form will suit my needs perfectly.

Diolch,

Matthew.

(5th May):

So there we have it, all sorted at last i.e. the Autism Spectrum Disorder Multi Agency Action Plan in the public domain. Obviously, this is an extremely important document for anyone concerned with ASDs; request a copy and I will forward it immediately; I'm sure RCTCBC would be more than pleased to hear your comments and suggestions. I will also send a copy of the Autistic Spectrum Disorder Directory of Services for anyone interested; you have but to ask.

Ask your election candidates to support people with an ASD! (Updated: 5th May)

noreply@blogger.com (Matthew) — Sun, 11 Apr 2010 19:23:00 +0000

Today, I sent an email to each of the Prospective Parliamentary Candidates (PPCs) standing for the Rhondda, via the NAS website, querying their stance concerning autism and Asperger's Syndrome (AS) in adults. Obviously, the more people who contact their PPCs in Wales, the better. So please click on the following NAS link and ask them what they intend to do for all people affected by Autism Spectrum Disorders (ASDs). Do it now! NAS link.

(Copy of letter sent to PPCs)

I am writing to you as a resident of Treorci and as a supporter of The National Autistic Society to ask you what you will do to represent the interests of people with autism and their families if elected.

- Autism is a lifelong disability which affects the way that a person makes sense of the world and relate to the world around them.
- One person in every 100 has autism. Together with their families they make up over two million people across the UK, or 3,000 in the average constituency.
- Outcomes for people with autism are often poor, but with the right support everyone can reach their potential and play a full part in society.

(My contribution to the whole message follows below)

An excellent example concerning the problems we face, is the subject of autism/Asperger's Syndrome and employment. Most people take the process of searching for and retaining employment for granted, whereas people who suffer from an ASD, such as myself, find this area extremely stressful and daunting, if not impossible. This is just one area where people suffering from an ASD require support. Obviously, Job Centre staff also need proper training if they are to properly help people whom suffer from an ASD. Confidence-building and people-skills' courses could also be another possible avenue worth exploring.

Consequently, I, and every other adult with autism/AS, would be extremely interested to know what you intend to do in regards to helping the many adults suffering from autism and Asperger's Syndrome in the Rhondda, who have had to endure many years without experiencing the full enjoyment that life has to offer.

(End of my contribution)

If you have already pledged your support, thank you. If you have not, please take a moment to stand up for people with autism in this constituency, in Parliament and by holding public authorities to account locally, by following the link below.

(NB: Everyone is welcome to pledge their support, not just PPCs! Matthew.)

http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=10&ea.campaign.id=6270

If you would like any further information, please contact The National Autistic Society by calling 020 7923 5799 or emailing campaign@nas.org.uk.

Thank you.

(End of NAS email)

(Updated: 13th):

Received a prompt reply on 11th from Ms Juliet Henderson, PPC:

Dear Mr ******
This is a subject close to my heart-Could I meet with you to discuss this crucial issue?
Best wishes
Juliet Henderson PPC Rhondda

My reply on 11th:

Dear Ms Henderson,

Many thanks for your prompt reply! I wasn't that confident about receiving any responses; I've been let-down many times, especially by RCTCBC!

Unfortunately, due to my condition i.e. Asperger's Syndrome, I, including many others in a similar situation, find it difficult to socialise. Consequently, if you are in agreement, I would prefer to correspond with you via email.

Thanks again. Diolch yn fawr iawn!

********************

Received a reply on 12th from Mr Chris Bryant, PPC:

Dear Matthew
Many thanks for your email. I have long been a supporter of those with autism and their families, have fought to get individuals the support they need and for the funding from the Assembly and RCT for the right services locally. I am proud of the fact that we have much better diagnosis of autism so that children can be given the right educational support as soon as possible.
I'm afraid I've not managed to make the web-site work, but I'm happy to be of assistance whenever you need.
Yours
Chris

My reply on 13th:

Dear Chris,

I'm very pleased that you are involved with helping children and their families who are affected with autism; keep up the good work. However, in the email you received, via the NAS, I was refering to adults with autism and Asperger's Syndrome (AS) and the problems we face. I was diagnosed with AS in 2002 but, unfortunately, have never received any assistance to cope with my disability whatsoever; reforming criminals have received more help than myself! Consequently, I would be very grateful if you could inform me, and others in a similar situation, on what you intend to do for us to make our lives a little easier.

The link in your previous email to access the NAS webpage is broken; if you use the following one I've provided everything should work properly:

http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=10&ea.campaign.id=6270

Regards,

Matthew.

(Updated: 5th May):

On the 29th April, I sent an email to, Mr Paul Wasley PPC for Rhondda, but have not yet received a reply. (The NAS had not contacted him and, presumably, there are smaller parties whom have met the same fate; I can only apologise for their oversight.)

I was expecting further responses to my emails from Ms Henderson and Mr Bryant but, unfortunately, they have both forgotten about this particular voter!

Yesterday, I received a reply from, Geraint Davies PPC for Rhondda. (Late in replying, but in all fairness The NAS had used an old, obsolete email address; so no fault of his own.) This is his comprehensive reply, for which I'm very grateful:

Dear Matthew

Sorry for the delay in replying but the e-mail address you used is now defunct.

Thanks for your enquiry concerning Autism and Asperger's Syndrome. Here is the Plaid Policy relating to the Syndrome and you note that we support the National Autistic Society’s campaign to improve services for adults with Autism.

Plaid Cymru is committed to securing a healthier nation through a high-quality, publicly-funded NHS, free for all at the point of delivery. Plaid’s vision is of health services rooted in the heart of our communities, a health service that is as much about promoting well-being as it is about tackling illness. We want a health service that will ensure that the people of Wales, whatever their background and wherever they live, have the opportunity to lead healthy and happy lives. Plaid believes that health and well-being services should be delivered according to local need in order to best care for our communities. We want to ensure that our health and social services are sustainable and can realise their potential to improve the lives of everyone in Wales.

Plaid Cymru calls for all powers over mental health to be devolved to the National Assembly. We reaffirm our commitment to Community Wellbeing Centres across Wales and evening surgeries for GPs. We demand devolved powers to legislate on other health-related matters such as sun beds, cigarette vending machines and the regulation of alcohol pricing. We also call for responsibility for the provision of ambulance services to be passed to the Local Health Boards in place of the current expensive and bureaucratic National Ambulance Service. Plaid Cymru remains committed to free care provision for older and disabled people and we call for the transfer to the National Assembly of the necessary powers. We oppose means-tested allowances and we will campaign to abolish the distinction between nursing and personal care.

Plaid is committed to investment in early intervention for children with autism and special needs which would enable local authorities to employ educational psychologists and other specialists to diagnose these needs and then provide the necessary support within a comprehensive bilingual service. In 2008, Plaid Cymru passed a motion which recognised that the number of children diagnosed on the autism spectrum is increasing and that in the future, greater numbers of these autistic adults with heavily dependent care packages will need to be catered for both in the care environment and the home environment. We are committed to calling on the Welsh Government to plan an increase in available resource to cater for a higher demand.

Plaid has advised all our candidates that we support the aims of the National Autistic Society’s campaign to improve services for adults with autism.

When I was a Member of the Assembly I had many discussions with members of the Autism Society and tried to improve services through the Health Committee. If elected I will continue with that work.

Best wishes,

Geraint.

Update to Specialisterne's development in Glasgow.

noreply@blogger.com (Matthew) — Fri, 26 Mar 2010 21:30:00 +0000

On the 17th March, I sent the following email to, Kevin Smith of CEiS, regarding the development of Specialisterne in Glasgow for the purpose of employing people with an ASD:

Hi Kevin,

I was just wondering if there were any further developments regarding Specialisterne's pending development in Glasgow. I've looked on the WWW, but have not been able to find anything relevant. Any information would be gratefully received, by myself and others.

Best regards,

Matthew.

**********

On 23rd March, I received the following email from, Mr Finnie:

Dear Mr ******,

I am writing in response to your recent email to my colleague, Kevin Smith, in relation to your enquiry regarding Specialisterne's pending development in Glasgow. My name is James Finnie and I have taken over the development of the Specialisterne business model in Glasgow from Kevin.

In response to your enquiry Mr ****** I would like to direct you to the CEiS website at http://www.ceis.org.uk/ where you will find a statement from CEiS regarding the latest developments in regards to Specialisterne's development in Glasgow.

CEiS will be making further announcements in relation to Specialisterne's development in Glasgow on our website as and when developments materialise. I will also be happy to keep you updated as things progress.

Regards,
James Finnie
CEiS Business Advisor
CEiS, Moorpark Court, 5 Dava Street, Glasgow G51 2JA, Registered in Scotland No. 87515. Tel: 0141 425 2900, Fax: 0141 425 2901, email: ceis@ceis.org.uk web: www.ceis.org.uk

END

If you click on: http://www.ceis.org.uk/specialisterne.html, you will be taken directly to the latest CEiS update (22-3-10) regarding Specialisterne's pending development in Glasgow, which includes an enquiry form for people to log their information request.

Wouldn't it be wonderful to see Specialisterne or something similar in Wales!

I'm very grateful to Mr Finnie for all his assistance.

WAG announces £1.7 million to support adults with an ASD.

noreply@blogger.com (Matthew) — Sun, 28 Feb 2010 22:47:00 +0000

"On 22 January, the Welsh Assembly Government (WAG) published its ASD Adult Task and Finish Group report, which makes a number of new recommendations for supporting adults with autism in Wales." (NAS)

For further details please read: "Deputy Minister announces £1.7 million funding for adult Autism services in Wales."

People on autistic spectrum need jobs too! (updated: 10th Feb.)

noreply@blogger.com (Matthew) — Sun, 31 Jan 2010 22:30:00 +0000

Don't Write Me Off NAS campaign, to get people with autism and Asperger's Syndrome into work, was launched for Assembly Members in Cardiff on 18th November 2009 - ask your AMs to support the campaign!

I contacted the relevant AMs, via the NAS website, for my region today; only two needed to be approached as three have already responded i.e. Leighton Andrews and Andrew Davies.

Please click on the following link for in depth details concerning the campaign:

http://www.dontwritemeoff.org.uk/en-GB/Nations/Wales.aspx

This is the link to enable you to contact your AMs:

"Don't Write Me Off: Email Your AMs."

Below is a copy of the email that was sent to the above AMs:

National Assembly for Wales
Cardiff
CF991NA

Dear Mr Andrews/Davies,

My name is Matthew and I am extremely concerned that thousands of adults with autism in Wales are being written off and consigned to a life of financial hardship without a job or essential benefits.

UK-wide research carried out by The National Autistic Society (NAS) for their Don't Write Me Off campaign has revealed the shocking scale of this problem:

- a third currently live without a job and without benefits (that’s an estimated 6,000 people in Wales!)
- over half have spent time with neither a job nor benefits.
- 79% of those on Incapacity Benefit want to work.
- only 15% are in full-time paid employment.

The NAS have also found that the new Employment and Support Allowance (ESA) is failing people with autism.

Helping people who suffer from autism and Asperger's Syndrome into employment is a worthwhile cause, especially when they have so much to offer society. We just want a chance to prove ourselves. (this paragraph was included by myself.)

It doesn't have to be like this. There are simple solutions to the problems many people with autism face.

Adults with autism need:

- Employment and Support Allowance to work for them.
- Jobcentre plus staff to understand and meet their needs.
- a Wales strategy to transform access to employment.

NAS Cymru believes that the Assembly Government's Task and Finish Group report on adults with autism in Wales represents a major opportunity to improve access to employment. Please contact the Minister for Health and Social Services to ask her to prioritise the recommendations in the report to deliver the changes called for by the Don't Write Me Off campaign.

Please also support this campaign, and help to make the system fair for people with autism by:

- signing the Welsh Assembly Statement of Opinion on autism, work and the benefit system.
- raising the issues mentioned as part of the Don’t Write Me Off campaign within the Welsh Assembly.

If you would like more information about the campaign, please call 02920 629 314, email campaignwales@nas.org.uk, or visit www.autism.org.uk/dontwritemeoff

I look forward to receiving your reply.

Mr Matthew ******.

(Update: 10th Feb:)

On the 1st February, I received the following AM email replies from Mr Davies and Mr Andrews; a very positive response from the former but, unfortunately, a rather confusing one from the latter (if anyone could explain, I would be most grateful).

From Mr Davies:

Dear Mr. ******,

Thank you for your E mail regarding the above.

I am totally in support of your cause and I have signed the Statement of Opinion to that effect.

I also gave my support to the recent "I Exist" campaign which raised awareness of the need for adults with Autism to be represented on local Authority Strategic Planning Groups for support mechanisms for adults - and I also wrote to The Vale of Glamorgan, Cardiff and Rhondda Cynon Taf Authorities to encourage them to ensure that such representation would be made. The replies that I received were very positive.

I can assure you of my continued support for those with Autism.

Yours sincerely,

Andrew R.T. Davies A.M. Shadow Minister for Health and Social services.

Via

Gerald Curtis
Researcher to Andrew R.T. Davies
Regional Conservative Assembly Member for South Wales Central.
Tel: 02920 898523
Fax: 02920 898371
E mail: gerald.curtis@wales.gov.uk

From Mr Andrews:

Hi Matthew

Nice tyo hear from you again. I cannot sign the Statement of Opinion as I am a Minister, but I will be followingh up the points you raise

all good wishes

Leighton Andrews

Leighton Andrews AM/AC
Assembly Member for the Rhondda/Aelod Cynulliad dros y Rhondda

01443 682550

5 Cemetery Rd/Ffordd y Fynwent
Porth
Rhondda
CF39 OLG

END.