Reader's Blog: No supports for high functioning ASD child

As a parent of a “high functioning” and indeed, highly intelligent, teenager with autism (and dyspraxia) who is seemingly quite functional some of the time (depending on the day and the circumstances), I find the article by Victoria White both personally offensive and irresponsible to have published at all ‘High functioning idealism is of no benefit to disturbed autistic children’ (Irish Examiner, February 28).

Reader's Blog: No supports for high functioning ASD child

As a parent of a “high functioning” and indeed, highly intelligent, teenager with autism (and dyspraxia) who is seemingly quite functional some of the time (depending on the day and the circumstances), I find the article by Victoria White both personally offensive and irresponsible to have published at all ‘High functioning idealism is of no benefit to disturbed autistic children’ (Irish Examiner, February 28).

Supports for those on the autism spectrum are very limited and even more so for those labelled as “high functioning”. Autism spectrum disorder (ASD) services, mental health services and education are all stretched and not meeting demands.

It’s not appropriate to suggest ASD is only a problem if it’s “severe enough” any more than it is to suggest that cancer isn’t a real problem unless it’s terminal. How bizarre to think like that and how offensive to publish it.

Teams of professionals are not diagnosing people with “a few autistic traits” as having a disability. By definition, a diagnosis of ASD means that supports are necessary. I can assure you my child desperately needs support. Despite being “high functioning”, smart and capable in many ways my child has not been able to access education since last April.

Mental health services have passed the buck back to ASD services and he has been on a waiting list for support since then. It’s been 11 months since our GP referred us for urgent help. Pieta House is the only support my child is accessing. Tragically, those who are high functioning can also be self-destructive.

But ask him about black holes, Harry Potter or gender diversity and you’ll think him a very functional and articulate expert in all fields. You would be in awe. This is not a measure of whether he could attend Disney on Ice or whether he will work for pay or live independently. These are all looking less and less likely over the past few years.

My child has not had any speech and language therapy, occupational therapy, nor psychological interventions since his diagnosis just over two years ago. He is not receiving an education at the moment. His needs are not “complex” but they are certainly not anywhere close to being met. His right to an education is not being actualised. This is a serious matter considering that the EPSEN (Education for Persons with Special Educational Needs) Act entitles him to an education.

I don’t presume to understand Mary or Victoria’s struggles as they parent their children. Each child’s needs and challenges differ and parents differ in their own coping strategies and the supports they can offer to their child. I don’t make comparisons. I hope their children are accessing an education and being supported by ASD services.

I hope that their families are figuring out which interventions are best in supporting their child and the rest of their families’ needs. I also love my son to the bone. I hope someday he, like others, will be able to articulate what makes him tick and perhaps offer insight into what might help or hinder a young person on the spectrum.

I see a benefit to listening directly to those with ASD in discussions around the topic; surely their insight is most valuable. I find these individuals inspiring and they offer hope that the world will at some stage see the ‘ausome’ in my child and celebrate his positives as well as support those aspects of life he struggles with (do I need to stress that they are not minor areas?).

With the right supports he might be just fine. Meanwhile, I’d respectfully ask that your newspaper refrain from suggesting that all is rosy on the “other side” of the spectrum. My child has a disability and I’m beyond angry at the complete lack of supports available to him without having a national newspaper suggest it’s not so serious.

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