Letter to the Editor - With Love

Dear Sir

I would like to offer to write a detailed response to the Examiner's Feelgood article of 3rd February which was published with respect to the role of the author as a "parenting expert' and the subsequent editorial response which said that he had a right to an "opinion."

(click on the highlighted words and you will go straight to whatever link I am referring to)

As the first article clearly set out to influence through the authors noted 'expertise' and made reference to a soon to be published book; I think it is only fair to give a right of detailed reply to someone who has spent 14 years studying autism parenting first hand, who has written thousands of words on the topic of day to day life with autism and who has made it their lifes work to give people with autism the ability to communicate independently.

I am talking about myself of course. As the creator of the Grace App for autism - a means by which a person with a speech disability can communicate their needs and interests independently in a way that they control, which is universally understood, I think I have some credibility when it comes to evidence based interventions that improve the lives of people with Autism. 

As the mother of a 12 year old and a 14 year old with severe autism - that is AUTISM not "autism" in inverted commas, I live my life trying to be as close to my children emotionally, socially and practically. We do everything as a family in a way that suits their needs and interests and will cause them as little anxiety as possible. This was illustrated to any one who watched us as family in the RTE documentary series "Life With - Autism" in October last year.

My husband and I have long acknowledged our own autistic tendencies. I am a great systemizer and scored highly in the Simon Baron Cohen online test that will form part of his long ranging study. I also scored highly as an empathiser?! 

So we can't all be put into convenient boxes when it comes to defining why we had 2 severely autistic children.
As for the theory of engineers and mathematicians "causing" their children's autism; my husband and I both worked in sales for years and I ban my husband from helping with self-assembly. While I am handy with a cordless 9 volt and adept at assembling flatpack, I am a rapacious multi-tasker. So your dam or bridge or Air-bus maintenance might be delayed while I put on a wash, hoover the kitchen and then have a quick check of facebook while my noodles are in the microwave. 

All things considered, I am actually quite comfortable with the idea of people with a gift for engineering or numbers having the propensity to have children who are diagnosed with autism. But I think it is a case of confusing what came first - the chicken or the egg.

Because I think that many engineers, architects and maths professors probably have a tinsy touch of autism in their own neurology. Autism can be extremely challenging to live with and I do not minimise the anxiety experienced by the autistic themselves or the families of children who are severely affected.
However, it can make you absolutely brilliant at focusing, at systemic planning, at visualisation of a completed project from a blueprint or lines of html code.

Bill and I have two nephews with autism/aspergers, we also have some relatives with dyslexia, dyspraxia and hyperactivity.  I find it really difficult to communicate when in a room where there is music playing AND people talking as I can't separate the sounds. I can't tell when people are being two faced or bull-shitting me and I'm baffled by office politics. All that scrambling to take credit for success when it was someone else's work - it would not feel right to me.

My husband as I said is not handy with flat pack furniture. He is a liability when it comes to putting up rails or hooks but he will tell you everything you need to know about bird life and their categorisation. He also believes in the Met Eireann online weather mapping and will deny it was ever going to rain, even when I am drenched to the skin dragging the washing in from a downpour - because it wasn't on the chart.

He had an extremely limited diet as a child,  didn't taste a tomato until he was 23, but when he joined the wine industry he could pick out a corked wine from 10 feet away - which is something very few people can do. 

So we met, we put up with each other's little foibles, we got married and pooled our genes and then we had not one but two children with full on, capital A- autism.
We used to both work in Sales, but not so much now as the role of caring for our growing son and daughter takes up a lot of our time and it has been really difficult to find meaningful work that supports our need for flexible carer's hours.

So why was the publishing of the original article so potentially harmful?
Firstly there are people out there, who believe that our kids are being over diagnosed with a mythical disability and that parents like us just need to cop on and stop wasting the state's time and money. These people vote and will re-elect a government that is cutting disability allowances, special needs assistants and access to home based help and respite.

Even worse; some of those people who will read the article as "proof" of what they have always thought, might be the neighbors, aunties, uncles and grand parents of children who are not developing at a typical rate. Who have not said their first word by 24 months. Who do not make direct eye-contact, who line up their toys in rows, or collect unusual objects obsessively, or who may be engaging in sensory seeking behaviours like flapping, head shaking, twirling or even self-harm.

The last thing these children and their parents need is some gobshite saying that all the above is the result of their unloving parenting and that they do not deserve a referral, diagnosis, qualified intervention and access to support infrastructure and help. Because the judgement actually starts at home. When your child is not meeting their milestones it is always so easy to blame yourself.
"You didn't eat the right food during pregnancy, you didn't breast feed, you breast fed too long, you didn't make your own gm-free organic babyfood, you went back to work too soon, drank too much coffee.. .blah blah blah"
That self-blame cycle can really slow you down but it is even worse when you have unhelpful relatives willing to agree with you. 

Blame does not equal acceptance. Blame slows you down, it makes you susceptible to conspiracy theories, snake oil cures and expensive quackery. Repeat after me: This was NOT your fault. This was nobodies fault. You can no more hold yourself responsible for your child's autism than you can for your husband's uncle's male pattern baldness or your maternal grandmother's disproportionate big toe. 

(we have so far missed out on the baldness but Gracie got the weird big toe)

If you are thinking there is an "epidemic" of autism - then read this article published by the National Autistic Society U.K. that demonstrated the 1/100 rate has actually been around for a long time.

If you are wondering why I am so comfortable with a scientific, genetic explanation - then read this link to the Trinity College Dublin neuro-psychiatric genetics and autism study that Bill, Liam and I have been contributing video observations, data and tissue samples to for almost 10 years. (Gracie is not good with Doctors or testing so they had to do without her involvement)

Bill and I actually competed ferociously to have the highest score on a set of visual language tests.

Professor Louise Gallagher who supervises our involvement in the study thought we were hilarious (the need to win is a very Aspie characteristic)

So the casually posted "opinion" of someone purporting to have an expertise could have far reaching consequences for families already struggling to accept Autism, and to make ends meet in order to provide some kind of quality of life for their children.

I'm here to try and counter that "opinion" as a working "expert" in the field. 

My Family, with extra Autism Goodness baked in.

To hear more - you could listen to this podcast from Wednesday when I was on the Newstalk Radio. The Author of the article declined to contribute.