Showing posts with label NAS. Show all posts
Showing posts with label NAS. Show all posts

25 Mar 2012

Soaring Autism Children

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:
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.

30 Jan 2009

Tony Attwood slams Action for Children ad

Mike Stanton has posted an email on his blog, which gives the response of Tony Attwood, a well known researcher on autism to the Action for Children ad. We have been given permission to share what he had to say:
“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.

Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.

He refers to reacting when people insult him. Those that insulted him need the treatment.”
There is no mistaking it.


There is no way Action for Children can wriggle out of this and try to fob off their damaging mistake by claiming that they were just letting Dan tell his story and saying that when we complain, we're being nasty to the poor autistic boy. This is precisely what they imply in their stock email, and what the few people who have tried to defend the ad on YouTube and on our Facebook group, have said.

I emailed the NAS last week about the ad, as did many other people. They have contacted Action for Children and explained how so many of their members are objecting to the ad, but unfortunately even they were sent the same pathetic excuses as all the rest of us.

I'm well aware that the ASA is receiving loads of complaints about the ad. There is also a Facebook group protesting Action for Children's MS ad. The ASA has been contacted by many about this too.

I hope that Action for Children will learn from all of this. They must commit to involving advocates from the groups they seek to represent. They must ensure that they are not misrepresenting people, or perpetuating dangerous stereotypes. As the slogan goes, nothing about us without us.

17 Oct 2008

"I exist" in Northern Ireland

The National Autistic Society launched their "I exist" campaign for recognition of the needs and views of adult autistic people at Stormont yesterday.

For my first time at the parliament building, the sky was startlingly blue as I made my way through the security posts to the revolving doors, location for some of the most cutting edge performance art the world has seen.


The launch was held in the prosaically named Long Gallery, and was so well attended that there was standing room only during the presentations. I was hovering around looking a bit lost, according to the two kind souls who offered me a seat beside them near the front. I ended up sitting two rows behind the four MLAs and right next to Mark Lever, the NAS chief executive with whom I had a brief chat.

First to speak were the politicians. I took notes as they spoke so can share my perceptions, though none of what follows is necessarily totally accurate. This is no Hansard report. I'll put my own thoughts in italics.

John McCallister (UUP) wishes for politicians from all the parties to work together on these issues. He acknowledges there is too little known about autism and that the state needs to work on the delivery of services to support adults. He called for the release of funds to support human dignity.

Iris Robinson (DUP) spoke as the Chair of the Health Committee. She said she's been interested in supporting people with autism for many years and visited the USA in 2007 as part of a cross party group with PAPA to find ways to meet their needs.
She said there's a need to get Statements earlier for children and mentioned that autism is diagnosed in the USA in a different way using a £1 million set of equipment called a MEG scanner.

(I looked up MEG scanners today since I'd never heard of them and they sound like a cool bit of kit, with SQID detectors and stuff that excites the usually dormant, medical-physicist parts of me.)

So back to Iris; she reckoned the high cost of a MEG scanner is justified by the high number of children with autism in NI. It would soon pay for itself as it could be used for people with epilepsy or who have had strokes or brain injuries as well as people with autism.
She finished by saying that we need to have a strong and inclusive voice and that education and social needs are especially important.

(I don't know how MEG scanners are being used to diagnose autism. They may play an important part in understanding he condition but I don't know if the limited funds available should be used to pay for one here when the need for basic support services in education, health, accommodation and employment is so great and underfunded. Also, is there really a centre of excellence in neuroscience where such a device could be put to best use, in NI?
Also, there was nothing in this speech about the needs of adults.)

Carmel Hanna (SDLP) spoke of the need to educate all of us to end confusion on autism issues, and said that we're all learning to listen to carers and parents about what it is like to live with autism. She said that the majority of adults with autism live at home with their parents which can cause stress and isolation for the parents, who can benefit from exchanging views with others in the same situation. She also told of the autism families who worry and dread the future and called for further training for health professionals. She said that the SDLP meets many parents and that they have a bigger lobby, and worried that older autistic people fall through the cracks in the services available and their physical and mental health can suffer, as can that of carers affected. She finished by calling for consolidation of services and said that her door is open to those needing support and help.
(The views, needs and worries of autistic people themselves were given much less prominence than the concerns of parents.)

Michelle O'Neil (Sinn Fein) was unable to attend due to a family funeral, and wanted to convey her support for the campaign.

Keiran McCarthy (Alliance Party) spoke last and said that he had little to add to what the previous speakers had expressed. But he added that autistic people need support, especially from the departments of health, education, employment and transport but from every other department as well so they can receive the same facilities as everyone else. He complained that various departments shy away from a joined-up approach meaning people lose out. He believes that early diagnosis of the condition would highlight the degree of spectrum (not sure he used the word spectrum here) to work out what provision is needed.
He wished we could do more to ensure all people enjoy a fulfilling and exciting life like you and me.
He finished by quoting from the report (showing he at least read some of it) that all are extremely valued and wanted people.
"I commit to ensure this."

Mark Lever showed a short campaign film then spoke briefly about the aims of the campaign. He told how "low level" (and presumably cheap) support services have made a huge difference in the lives of some people. He said that gaining services is often a battle when it should be a right. He believes that if we can make people aware of autism and its impact, then more people would be keen to act to improve things.

He was followed by Regina Cox who highlighted the findings of the NI report showing that many people haven't got a clue about autism. (This is no surprise.)

Regina then introduced Jenny McCleave, a young, autistic woman who read a few extracts from a short book she wrote for her family. (I have no notes for the next two speakers as I was so engaged by them that I forgot to write anything down.) Her contribution was incredibly moving. She spoke clearly and simply about her struggles to be heard and taken seriously. She wasn't diagnosed as autistic until she was (I think) 18 despite telling those around her for years that she knew she was autistic from the descriptions she read of the condition. She was always told, no Jenny, there's something wrong with you but it's not that. She was so frustrated and isolated that she considered suicide, and her diagnosis was a relief and vindication of what she'd known for years.

She spoke too about love and how people like her are capable of love even if they don't show it in normal ways. I, like the women sitting next to me, had tears in my eyes by the end of her short presentation. I felt so for the unnecessary suffering she's undergone, and wondered again how it is that people are so blasé in claiming that autistic people lack empathy when the truth is often the opposite.

Another autistic speaker called Rob Devlin spoke for a time. Again he described the difficulties he's faced as a child, the bullying and awful time he'd had a various special schools. His diagnosis didn't come until he was 14. He now lives at home and aged 29, is trying to get work as a voice-over artist. (He does have a wonderful voice.)

The event ended with a talk from Geraldine Banner, described on the programme as, mother of Noel, an adult with autism.

As she spoke, a huge photo of her son was displayed on the screen. I don't know if it was a particularly unflattering photo of the young man, but it felt a bit exploitative to me.

She started her talk with the words, "autism is a life sentence with no parole" (which jolted me, I thought it was a disrespectful choice of words) and said it affected the family and extended family. She said that her son is severely autistic and non-verbal. He was at a special school but the placement failed when he was about 13. She contacted the Camphill school near Belfast but they didn't ahve a place for him so they got him a place in a Camphill school in Scotland. He was there for about 8 months but that too failed, "due to his autism". She found out about another residential school in Scotland and visited it, was impressed and determnied to have him go there. She drove back to NI from Scotland with her very distressed son in the back seat, went to see a psychiatrist in Derry and though she said the doctor advised against it, had her son admitted to hospital (I presume she meant the psychiatric hospital) while she got her MP to secure funding for him to go to the residential school in Scotland. He had a difficult start and displayed self-injurious behaviour and aggression towards the staff and his peers. But he battled through adolescence and recently celebrated his 21st birthday with family and friends and it was a fantastic experience.

She wondered why there are no services available in Northern Ireland.

So ended the event.

I spoke for a few minutes to the chief executive, continuing the conversation we'd started before the presentation when I'd asked if he knew if any adult autistics would be there and I asked if they thought about showing videos by other self-advocates. He told me about various videos he'd seen and other pieces of art that represented the voice of people who wouldn't be comfortable enough to speak to a crowd or engage directly in events like this one. I asked him if he'd seen Mike Stanton's presentation at the NAS conference about the Autism Hub, he had and he commended Mike's work.

I didn't get a chance to speak with anyone else in any detail.

Before I left to pick the children up from their grandmother's, I joined a tour of the building led by the UUP MLA. We headed into the debating chamber where DUP MP Sammy Wilson was talking to a group of school children (who looked utterly bored). He talked about the role of the speaker and how debates work and asked if anyone had a question. I wanted to ask, Mr Wilson, as Minister for the Environment, have you any evidence for saying, "I am not convinced and I don’t think that there is any firm evidence to show that all of that climate change is due to CO2 emissions." Further, is there any chance you lot will be getting back to work any time soon?
But I held my tongue.

So that's what happened. I have lots of thoughts about it all, some good, some bad. I think the aims of the campaign are sound and support them fully, but I worry that the ends don't always justify the means and there's still a lot to do to get people, even those presenting at an autism conference, to think differently about autism.

2 Oct 2008

NAS "I exist" campaign in NI


The UK autism charity, the NAS, has been running a series of campaigns aimed at improving the lives of autistic people and increasing people's understanding of the condition.

I exist, is a campaign specifically designed to highlight the needs and concerns of autistic adults, who are so often overlooked whenever autism is discussed in the mainstream media.

The campaign has been running for a while in England and claims some success. It will be launched in Northern Ireland later this month in an event at Parliament Buildings in Stormont. I received an invite to attend, though I'm not sure why. I will go. It'll be interesting to have a look inside the parliament building and to participate in this kind of mainstream charity campaigning, both for the first time ever. I hope that the majority of those present or represented will be autistic adults, rather than parents of young children like myself.

I have limited experience of greeting and interacting with those whose views I detest. Among the politicians hosting the event, is Mrs Iris Robinson, known for her homophobic views. I wonder if she also favours the discrimination of disabled people or only for gay people?

However I will be on my best behaviour, and have no idea how many people will be there and just who I will get a chance to talk with or whether it will be more of a sit down and listen to the speakers type of event.

Whatever happens, this NAS campaign is an important one and one I fully support. There's a real need for a campaign to improve life for autistic adults here.