Friday, June 13, 2014

Valuing Autism

Last week I was asked to write a guest post for an organisation that works with Autistic people around the world. They gave me a brief to write about a topic I'm passionate about in a way that takes into account my experience as an Autism App creator, advocate and trainer working in Australia and UK/Ireland.
So I did what I always do when on a deadline: I cleaned my house. I vacuumed and mopped and tried to think about the brief, while my brain kept pondering this:

"Where is my son going to go when he leaves school, and why is it so hard for people to see his value as a person with autism, rather than his cost?"

Then I saw this article:  "The Lifetime cost of Autism" published by Time Magazine which uses this quote:
"David Mandell, director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, who points out that not enough of the debate about autism’s toll includes consideration of the indirect consequences of the condition."
The article goes on to say that investment in intervention and workplace support would reduce this cost but most people zone out by then.
As the parent of 2 autistic teenagers I have spent thousands of euros intended for 'home improvements' (as we told the bank) on evidence based home tuition; I totally get that supporting people with Autism can cost a bit more upfront. But I have always seen it as an investment!
So I wrote this: 
My name is Lisa Domican and I am the mother of 2 healthy, energetic, engaging and good-looking teenagers; who are both very autistic.
I co-created the Grace App along with my daughter Grace and a very clever young Games developer called Steve Troughton-Smith.
Grace App is a picture communications system for smart phones that has enabled 30,000 non-verbal people with autism or other communication disabilities to ask for what they want.
Unlike the multitude of picture speaking apps that followed, Grace app was created to be owned and controlled by the person who needs it. The goal is to give the user, the person with the disability, total control over what they want to communicate, and the means to do it independently.
When you have a child with Autism, the hardest thing is when your kids can’t and won’t interact with you. I felt like a failure as a parent because I couldn’t “reach” them. I made it my life’s work to find a way to connect. I needed them to need me and now they do. I have value in their lives.
I have been fortunate enough to travel around the world giving talks and have accepted international awards for my work with Grace App; but nothing matches the feeling I get when I know that both my children are well cared for and content to be with me at the end of the day. That was the culmination of 10 years of studying and learning about Autism. Achievement unlocked.
Today I am facing into the fact that my son will be finishing school in 2 years and there is no provision in place for where he will go after that. We’ve just gone through a 7-month process of applying for a disability allowance for him, but at no point did anyone ask what else he could do. He basically has no value in our economic system and is seen as a net burden to be managed.
Sadly I see this attitude wherever I go. Autistic people are not worthy of the investment in systemic change that is required to truly enable them to reach their potential and be a valued part of our world.
We know what needs to be done: early recognition, early diagnosis, early evidence-based intervention and life long support. This combination vastly improves the chances for people with an autistic spectrum condition to have equal access to independent fulfilling lives.
The value of their potential contribution has to be recognised in order for the incumbent systems to accept change.
This would be so easy to achieve! Access to high quality primary care professionals trained to recognise autism would vastly improve early referrals. Access to well-trained diagnostic professionals who do not delay diagnosis would enable much earlier intervention. Access to early evidence-based intervention with qualified professionals would improve the quality of that intervention. Access to parent education would enable them to accept and cope more easily with the changes they have to make to support their children.
Individually planned education in settings that suit the needs of the learner would enable people with autism to progress through their academic education, while getting the specialised help they need with life skills in the same setting. Inclusion on their own terms would enable them to learn from peers with support, but also create communities of better citizens who see inclusion in every day society as a right, not a privilege.
I have never been one to look too far ahead in my autism journey. One bite of the cookie is what I say and leave the rest for later when you feel up to it. Adolescence and impending adulthood has forced that giant cookie in my face and I have had to try and nibble around it, looking for the best way in.
Lying awake and worrying into the small hours of the morning never does me any good. So today I choose action; I am going create an occupation for my son that utilises and values his skills with technology while supporting his additional needs.
My aim is to bring together Coders, Developers, big corporations, social enterprise, Behaviour Analysts and politicians to create a “finishing school” for people with autism so they can earn a living in technology or whatever their skill might be.
I’m going to take advantage of the profile I have from creating Grace App and use it to engage the people I need to make my master plan happen. All parents want the best for their children and parents of children on the spectrum are no different.
I want my children to always be a part of my life, but I also want them to have the chance to play a part in shaping their own lives, on their terms in the way that suits them.

photo

11 comments:

Looking for Blue Sky said...

Love your master plan, and if anyone can make it happen, you can x

Rachael Hall said...

Look forward to seeing the outcome! I to worry about the future of my son, will he be at home for ever, will he ever be accepted by society, or will they always see him as a burden. My child is 7 and his talents range from that of a 3 year old to a 14 year old. His visual perception is amazing. On a visual level he is magical and well above his peers, it's not all doom and gloom. What you are doing is magical, and I also hope to achieve progress in society with my role as Disability Employment Consultant. Thanks for your piece, what a great read.

K.Line said...

You are like the Martha Stewart of autism advocacy (without the jail time!). I LOVE your plan and I know you will achieve it as you do everything else you set your mind to. And finishing school sounds so refined :-)

Steph Curtis said...

Congratulations on all you have achieved so far; it seems to be a sad fact that the battle is never over but I admire your strength to keep going. You are definitely a 'do-er'!! Over from Love That Max x

Anonymous said...

Completely agree. As the mom of a 14yo young man, and "transitioning "in school, I am findng his school does not value him nor see him as an individual. Everyone's grouped together after 8th grade in a RR. It's all about money and power. Education is secondary, and an INDIVIDUALIZD Education Plan is non existent in public sschools. NO ONE is holding schools accoutable for follow thru! Anyone with a disability on an IEP will not get an education.

Caylee said...

There's a Danish company, founded by a tech executive with a kid on the spectrum, that does exactly what you describe called Specialisterne:

http://mobile.nytimes.com/2012/12/02/magazine/the-autism-advantage.html

Rather a lot of folks on the spectrum (without co-occurring conditions) seem to find happy homes in academia -- my parents are both profs and, umm, half their faculty of materials science and physics colleagues probably would be had they been born 25-40 yrs earlier.

Ditto for uber-specialist doctors (which I say with love, seeing as I'm married to one) -- the sort who end up as, say, pediatric nephrologists. It takes a *special* kind of person to spend all day, every day looking at children's kidneys, to find every kidney interesting, every single day for 40+ years. After spending a million years in grad/med school, focused on kidneys.

Both are areas in in which having all your eggs in the proverbial brains basket, with few/none left over for social skills, is simply par for the course.

Lisamaree Dom said...

Thanks Caylee. I actually know Thorkil Sonne and the people involved with Specialisterne in Ireland - we are such a small country that everyone involved in social entrepreneurship knows everybody else! They specialise in getting Aspergers adults on the spectrum back into work. What I want to create is a pre-school leaving program that allows kids with higher challenges to work in an environment where their skills are nurtured so they can work when they leave school. Kind of a mix of Specialisterne and Coder Dojo with a bit of App Camp for girls (and boys) xx

Anonymous said...

You go girl! Talking about STEM and autism, next week I am at a conference on maths education here in Dublin talking to maths lecturers like me about helping students with ASD, dyslexia and ADHD. People are more aware than ever, and hopefully employers will catch up soon!

Truf

Anonymous said...

I play the flute, bake, and rock climb. Can this be translated into a practical skill?

Lucy Lawton said...

I love this article and I share your passion for change that is so crucially required now more than ever, to give autistic adults a place of worth in society. My son is just 3 and a half, diagnosed as 'moderate' on the spectrum, but amazes me with his talents in technology and memory already. He has so much to offer and I pray your master plan works, I am fully behind it. With you all the way! I write on autism and education at lucylawton.wordpress.com I would love to know your thoughts.

jazzygal said...

Oh, if anyone can make this happen YOU CAN. Love it, it makes perfect sense. xx