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.


Anonymous said...

Just having the discussion seems a step in the right direction.

Sharon McDaid said...

Oh yes certainly! It's a good campaign with laudable aims and I can only hope it's as successful as possible.

Anonymous said...

I hope this discussion is only the beginning of greater understanding and help for all involved.

abfh said...

She said that the majority of adults with autism live at home with their parents

The trouble with statistics like this is, of course, that many autistic adults who are not living with their parents have not been officially diagnosed and therefore are not counted in the statistics.

Larry Arnold PhD FRSA said...

The trouble with statistics ABFH is that 80% of them are made up on the spot :)

Suppose for instance a study proves that during the last Ice age red haired people were 20% more likely to be eaten by Sabre Tooth Tigers, that also means that 80% of them weren't be eaten by Sabre Tooth Tigers (though the statistics of redheads being trampled on by Mammoths is not recorded)

Sharon McDaid said...

Hi Grannymar, I hope so.

Abfh, the statistic comes from an NAS survey that autistic adults and the carers of autistic adults were invited fill in. I don't know what the ratio of parents to autistics was. I agree that many autistic people are undiagnosed and are not counted. Perhaps the NAS quest to get more accurate numbers in England will help. Though I don't know how that study could possibly work.

Larry, the sabre tooth tigers are after the autistics now.

Have you had any input to the I exist campaign? I'd have liked to have seen one of your videos at the campaign launch. That might have shaken things up a bit!