High functioning idealism is of no benefit to disturbed autistic children

A child’s chances of inclusion in wider society are greatly enhanced if he or she manages to model behaviour which is more like other people’s. That’s a lesson every child must learn, disabled or not, says Victoria White.

EVALEEN WHELTON of AUsome Cork, says my article in this space last week is handy in that it “puts everything that’s wrong” about people’s attitude to autism in this country in one space.

I think the disagreement is interesting and important.

Whelton, who has an autism diagnosis, is in truth advocating for the rights of people like herself who are highly intelligent and highly functional.

She was speaking at a conference on autism for autistics which she organised at the Rochestown Park Hotel, Cork, last weekend and the video is available on the AUsome Cork Facebook page.

She is also the founder of a drama school called Konfident Kidz and is an excellent speaker who betrayed not a single autistic trait to a couple of readers who contacted me after the conference.

I don’t doubt her diagnosis for a moment. The point is, however, that Evaleen Whelton’s autism is not comparable in almost any way to the condition of a boy like my son, who has “complex needs”: autism, an intellectual disability, dyslexia and ADHD.

He will never work for pay or live independently.

I love the bones of the boy, I delight in his company and can only pray that I will be spared long enough to travel on the Transiberian Railway with him, as he wishes.

For the moment we’re making do with Disney on Ice. He will be the only 17-year-old boy there. I don’t care. What an excuse he gives me to do fun things.

I can enjoy my son’s company because his behaviour is nearly always good, though the idea that I would wish him to be “compliant” is a concept which makes Whelton angry.

Yes, I want him “compliant”. I don’t want him to run in front of a car when I ask him to hold my hand and wait. I want him to be able to enjoy parties and trips. I don’t want him to hit me.

I want him to be happy. Whelton is perfectly right in saying that “challenging behaviour” (a term she hates) is a symptom of emotional pain.

I don’t want my kid to be in pain. I don’t believe the world can be changed enough to make the inputs to his disordered senses bearable so yes, he is medicated.

Medication has been life-changing for us. It means we can live and it means he can sleep.

Whelton read out the passage from my article last week in which I described the horror of what we went through when Tom was about five years old. I stand by every word.

My life was indeed a “living hell”. That’s how you’d describe a life in which you do not know from one minute to the next what violent assault might be carried out by your child on himself or on another.

My fear of, and for my child, was not created by some media myth about autism. He was not just one of the “weird people like me and my friends”, which Evaleen Whelton mentioned at the conference. He was totally out of control and the fact that none of this was his fault doesn’t change its impact on him — or on us.

And yet mine wasn’t a true horror story.

Mary, who rang RTÉ’s Liveline about an out-of-control autistic and intellectually disabled seven-year-old son who had prompted her to make a suicide attempt, is living that horror. Her love for her child is not in doubt but I repeat, what she, and other Liveline callers with similar stories, are living through is too much for any one human to bear alone.

She needs massive support from the State and from her community to allow her to keep being Mammy to her child.

Making out that there is no such thing as “challenging behaviour” or that it is not a valid aim to make a seven-year-old “compliant” will militate against her getting help.

One of the Irish Examiner readers who contacted me after the conference was particularly upset by Whelton’s absolute rejection of ABA — Applied Behaviour Analysis — as a treatment for autistic children: “It’s not good for us,” she said. “It rewards you for being somebody else.”

Hard as this is to hear, a child’s chances of inclusion in wider society are greatly enhanced if he or she manages to model behaviour which is more like other people’s. That’s a lesson every child must learn, disabled or not.

Wild claims have been made for ABA as a “cure” for autism. It isn’t. It also has no impact on a large percentage of ASD-affected kids.

It is, however, one of the very few interventions which is listed as having some scientifically validated benefits in the UK’s rating of interventions for autism and many parents credit this one-to-one education programme with hugely improving their child’s chances in life. That’s presumably why this State funds 12 ABA schools.

We do need our own scientific evaluation of its benefits to Irish kids so far, given its huge cost. We also need our own scientific rating of all the interventions out there and massive warnings against quack diets and dangerous so-called cures like MMS (bleach), against which AUsome rightly campaigns.

AUsome Cork has every right to do what it does, which is building a rights-based approach within what Whelton describes as “the autistic community”. The truth is, however, that the community only includes ASD people who are functional enough to play a part in it independently and that must exclude a massive percentage of autistic people. Half of autistics are intellectually disabled, some profoundly so.

AUsome needs to be there but the conference was co-funded with Supervalu by AsIAm, which claims a wider brief as “Ireland’s National Autism Charity and Advocacy Organisation”. Founder Adam Harris spoke very well as did AsIAm board member Brian Irwin who explained that he had “chosen” his autism diagnosis as a useful tool with which to navigate through life.

ONE member of the audience who contacted me was distressed at the idea of an ASD diagnosis as a “choice”. It’s true that highly intelligent ASD people can sometimes counteract the effects of autism if they understand them.

It is a shame that the term “Asperger’s Syndrome” has been replaced with “High Functioning Autism” because the autistics of normal or above normal intelligence face a different set of challenges than do their low-functioning peers.

Probably many of us hoped our kids would turn out like Harris or Irwin, who held their audiences with excellent speeches, but this level of functionality is out of reach for most.

However it is they, and super-high functioning autistic people like them, who are the national face of autism. They are the faces people want to see, the voices people want to hear.

This gives them an excuse to ignore the plight of people like Mary who needs their help right now with the deeply disturbed autistic son she loves so much.

This article was amended to correct errors in the names of two of the speakers on March 14, 2019

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