Thursday, 19 April 2012

Autism NI - Playing Doctor

Within Autism NI's website is a booklet entitled 'Waking up to Autism Spectrum Disorder - An Issue for Mental Health Services. here . It's dated January 2012.

Autism NI claims this booklet will help to inform mental health professionals about ASD and provide information on treatment options.

Did I miss something? Are the staff at Autism NI fully qualified medical professionals as well as professional fundraisers?

Is Arlene Cassidy, the CEO of Autism NI qualified to provide psychiatric prescriptive advice to anyone much less Department of Health employees and officials?  Two whole pages of this 11 page document refer to various and sundry drugs including Lithium, 'neuroleptics', SSRI's and stimulants. These drugs are referred to in this hastily copied and pasted together mishmash of a document, as 'treatment' for autistic spectrum conditions. The title of the document 'Waking Up' to Autistic Spectrum Disorder, is a misnomer. All this document wants is for adults with autism to be drugged and asleep!

Apart from the laughable content of this document, no attempt was made to provide one reference to what it purports as 'fact'. There is, however,  a suggested reading list with books that stem from the 1980s to the mid 1990's.

Autism NI does not appear to be concerned with citations or references. Looking through their other 'information leaflets' and so called 'research' papers, references are scarce, researchers are often not researchers, but rather "friends" with Autism NI.

This document is wholly and utterly irresponsible and I strongly urge readers to contact Autism NI and demand that it is withdrawn from their website. I also suggest you contact Dr Michael McBride, Chief Medical Officer for Northern Ireland and advise him that Autism NI is providing dangerous information regarding autism. 

If you are a person who has autism and you read this document please do NOT believe that the drugs listed in this document are a 'treatment' for autism. Can we all please remember the tragic story from last year that resulted in the drug overdose of a man who had autism. here

Autism NI allege on the final page of this document, that it was printed in partnership with the Department of Health, Social Services and Public Safety. I find this very hard to believe and will be forwarding a copy to the Department to find out the names of who, if any, were involved (probably none)  I think what really has happened is that Autism NI printed and uploaded the document hoping no one would actually question it.

You can contact the DHSSPSNI yourself via this link: here and ask them yourself if they participated in this 'information' leaflet.

Autism NI will continue to produce this kind of non-referenced fallacious rubbish until people demand that they stop. 

Shame on you Autism NI. Please remove this offending document from your website immediately. For that matter, you could do us all a favour and remove most of what is on your website. It's fatuous, gratuitous and very often just plain wrong. Please enter the 21st century.

Autism NI has received accolades (and tens of thousands of pounds) from pharmaceutical giant Glaxo-Smithkline. Alarm bells should ring in any person's brain when autism charities receive lovely lolly from big pharma. 


Eddie Damon said...

No offence to the woman in the photo/video but she doesn't look like she would inspire me very much.

After reading what you say about the suggesting of drugs for people who have autism I feel now very very angry. What about all the talk of autism just being a different kind or way of thinking? How come that has to be drugged then?

Where is the respect? I don't see any. If you are different in Northern Ireland you get drugged up and a charity that is supposed to be helping you tells others that it is ok to drug you.

really depressing to read. I have read all your blog articles. Do you get responses from this charity at all or do they just sit by because they know its all true and there is no response to be made?

help needed said...

When I was 12 years old I was told I was autistic. No one knew what that means. I have lived now to age of 37 and I still don't know if I am autistic or not. My life has been effected for all those years with problems with my mental illness. I am very sad reading this. Some of those drugs were given to me and I know I didn't need them. I want understanding from my family not drugs.

As for doctors I would like to meet a doctor who thinks he knows about my life with autism. They dont exist. I have just emailed the contact you gave and made a complaint about all the drugs. I used to have a whole medicine cabinet of drugs and almost ruined my life.

Will others speak out about what you say? I know people who read what is in this blog but they say they dont want to talk about autism anymore. They dont think any thing will change. Its not a good life with autism where no one understands. I have lived this way my whole life.

daisy said...

help needed, I wish everyone was as brave and open as you have been. Autism isn't a 'disease', and doesn't need a 'medical' approach unless the person has other (medical) conditions that need treated.Eddie asked where is the respect and I can't see any in this leaflet either. Any charity that links its name to a pharmaceutical company needs to ask itself about conflict of interest and who is benefiiting from this.

We should get mental health advice from properly qualified, experienced professionals who put their name to what they write. So I'll be contacting that link tomorrow & I hope a lot of other people will too

daisy said...

I rang the switchboard contact you gave, got put through to someone who had never heard of this leaflet.They are going to ask the autism strategy group about it and I will ring back next week for more info on who wrote it & why all the references are so out of date (some are 20+ years old) when there is so much new research around.

I couldn't bring myself to ring autism NI, reading some previous posts from their members who were barred from Facebook for asking what were taken as 'problem' questions & made to feel very uncomfortable, I can do without that sort of stress.

wisemum said...

I'm a mum of 3 children. They are ages 3, 8 and 12. My 8 year old has autism.

Can we do something to make people take notice of how our children are growing up with no jobs and no lives?

What can we do?

Its ok writing about these things but what more can be done?

desperate housewife said...

The jobs thing is hard, but not just for autism. If you have a disability you are likely to end up with the poorest paid, part-time jobs, sometimes just a way of employers getting government funds & the jobs are really boring & teach people nothing about the real workplace. It is changing a bit for autism though, maybe because so many parents now have adult sons & daughters with autism , see

As for no lives, that is something as parents we have to do for our kids- to make sure they are not excluded from 'real life'. Shopping, school trips, cubs, scouts, brownies, sports,horse riding, summer schemes,trips to the zoo, whatever interests them, ask about joining in, offer to go along with them & volunteer in any organisations which you think your kids would enjoy. Ask social services about support in after schools clubs.

It takes a lot of planning & work, but it's worth it. And if your kid sometimes behaves badly, so what, the world is full of children behaving badly (try your local Tesco on a school holiday)& most of them don't have autism. Tomorrow is another day.Don't give up.

Anonymous said...

My daughter's paed tried to force my little girl to take ritalin. We are being hounded by social services now because they think what the doctor said is correct and what we think as her parents, is not right.

There are other parents in Northern Ireland in my horrible situation. I can't post my name or where I live for fear of them.

Things are not getting better, but much worse. My daughter only needs appropriate education facility, and not more drugs. If anyone is in the same position maybe they will post here. No where in Northern Ireland is there anywhere to speak up. No one has listened to us but just blamed us.

claire said...

next they'll be recommending lobotomies! this is truly shocking...i'll be complaining will share any responses :(

AutismNorthernIreland said...

Claire, Northern Ireland has nothing to offer adults. Autism NI in particular do not have programs for adults, do not work with adults generally.

For 20 years they have received vast sums of money from the government to run programs but what has been the result of all that money?

Adults in Northern Ireland have been horribly let down and our kids are next if we don't do something.

OUr children cannot be allowed to be the next batch of adult 'statistics'.

I don't know about you but my aspirations for my children do not include drugging them and institutionalising them.

In terms of lobotomies, pray they never find their ubiquitous 'gene' for autism, because you know what will happen - same as for the 'choice' parents are given regarding their foetus' that have the gene for DS - abortion.

Anonymous said...

what is this one to one therapy that can help ur non verbal child speak again and does the nhs help with the cost, can someone send me a link so i can find out more about it and how much it costs. I just feel so lonely atm and tired im tryin everything i csn think of and being strong for the rest of the family. I cant sleep my mind never stops i just want to wrap my daughter up and hide away from the world but i kniw i cant do that. I,m reading everything i cana nd working with her everday. im not working as i have to look after her, im very intrested in this one 2 one treatment.

daisy said...

Ok,rang dhssps again about that booklet and spoke to someone else. They did fund it, but it was some time ago. It's now been passed on to their mental health specialists for a review, fair enough if they are going to get back to autism ni then they need to have an idea of what the issues are (though they are all on this blog).

Being out of date isn't the only issue.This looks like it was written by autism ni, there is no mention at all of dhssps until the very last page,at the bottom in tiny print, and no names.As the blog asked,what are the qualifications of the people who wrote it? And the drugs- out of 9 paragraphs on 'treatment', 7 are about drugs, very powerful ones at that. The other 'interventions' are barely touched on, and not anywhere can I see any mention of asking adults with asd what they feel would be useful. I don't want my brother or my son having drugs prescribed because his cpn or psychologist has been handed this booklet as some sort of training.

If dhssps want to improve the mental health of people with autism , they should ask them what they think would help- and I figure a decent job and safe independent housing would go a long way towards that. Money better spent than on that booklet- does anybody know how much it cost?