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.

Meet Ana

So April is over but Autism is still here and I'm delighted to introduce you to another guest blogger: Ana Nguyen

Ana

Ana emailed me about a week ago to ask if I would feature posts by Adults on the spectrum. "You bet!" I replied.

Ana rang me today (from Australia) as she is very keen to see me post and I had to explain that I've been too tired to write.  I've just been through a week of anxiety with Gracie that involved a lot of obsessive compulsive behaviour and not a lot of sleep (for either of us.)

We have been trying to reduce her meds for the last 6 weeks in consultation with her Psychiatrist, as they have health implications that are amplified by puberty. I guess we brought them down too much, too quickly.

When you are in the middle of something like that as uncomfortable as it is for you; the most distressing part is how much your child is suffering.
Having people like Ana who have experienced these things, and have the ability to explain it is such a privilege. It it gives me strength to support Gracie better through understanding.

I am going to leave it to Ana to tell her story in her voice, unedited and I would encourage you to read, share and give her your feedback. She really deserves her own blog but I'm delighted that she has given me the opportunity to introduce her to you.

Cultural note: Ana and her family are from a part of Sydney, Australia that was settled by South East Asian immigrants in the late 70's and 80's. Australia has been shaped by waves of immigration since WWII. As with any new country the immigrants cluster around certain areas surrounded by their own language, culture and food. They are often too busy earning and trying to put down roots to be able to learn enough english to navigate bureaucracy and access state services.


Her family name of Nguyen is pronounced "Wen"

Ana’s Story:

Thanks for the honor to be able to write on your blog. It's been really fab. Anything to do with autism is good, as long as it generates publicity then it doesn't matter really. As long as it's good publicity then it's all what matters, as an autistic woman living in South Western Sydney, I feel that I still need to be out there doing "autism awareness", spreading awareness though my music, political activism and through public speaking and fighting the stigma and also fighting the social taboos within the area of multiculturalism and uniqueness

I feel personally that it was important, so that was why that I am doing this. I am doing this, so then at least that I can educate my people, in the area that I am from and I will never forget where I am from.

To introduce myself to you all, I am Ana Nguyen and I come from Fairfield (in the South Western Sydney), Australia. And I have autism. I was diagnosed at the age of three, it was really tough that I could not understand. I had no idea on what I am going through, as I have struggled massively. I have been through meltdowns, not knowing how to communicate, nor express myself in a way, punching the doors, ripping the house apart, always alone and never social (very normal, if you're like me, of course but that's how I dealt with), I bang myself in the head and I was violent, I was somewhat a control freak, i get scared, i get feared for the worst to come. Not knowing what I had. But I am sure that I have gone through these moments, like many of you. I am no different. I have going through personal troubles like everyone else and I am no means perfect. I am just like everyone else.

It freaked my parents out. It scared them deeply. My parents had to work really hard to make ends meet, in a bid to pay for the house and for my autism, if that counts on my radar. It does surely hurt, especially when people have been ignorant of my parents. They have no understand of what it was going on at the time and felt like that they have been hurt by these events, but had quietly kept on working, day in, day out and paying all these bills and on top of it, is that they have to look after me and my brother 24/7. It was really hard on my parents but gladly, they taught me on the importance of hard work and it's something that I will learn from my parents.

And I am glad that I did. My parents taught me to do the right thing and respect my parents.

At the age of three (in 1993), I was diagnosed with severe autism. It was a shock to my parents. I did not talk before the age of five (in 1995), I was put then to special needs schools in Lansvale and Smithfield and in 1996, I went to Holroyd Special School for one year before I was transferred to Merrylands Public School (in 1997) and stayed there for the whole duration of my primary school education. I did not know who I was when I was at those schools, I did not know how to communicate, nor be able to express myself in a way as I should, I did not have any friends, I copped racial abuse due to the fact that I am Vietnamese, different and unaccepted and I had no confidence.

Singer

I was too dependent. I was too needy. I was then had to learn how to read and write basic words, right in the beginning and know the simple numbers (in the I.O class) before I went to the I.M class (in 2010) and is gladly progressing while being in those classes and was being able to learn the very basics (of arts, writing, reading, spelling, maths, etc), right in the beginning and learned how to speak well and socializing with people (as socializing and communicating is difficult for me and will have to find another way to express in a form), read, write and how to swim before I was left to say goodbye and moved on to high school, in which that I finding it scary, as I was forced to left my so-called friends behind and start a new chapter without them. It made it very easy, as everything was done for me but it gets pretty hard as I was literally had to be on my two feet and was forced to adapt.

Rapper

it was one of the hardest things ever and I am finding it difficult, I have been bullying, copped racial abuse and name calling during my time and in one point, the guy that bullied me was forced to say sorry over the SARS Outbreak and it made me cry that I had to tell him and that was why. and the whole bullying and the abuse had went on, every single time I went to school, it happened constantly, it could not stopped by the amount of bullying.

Performer

I was literally be forced to ignore them and quietly gone on with studies while the bullying continued on and at one point in time when it gone really bad with bullying, I was forced to quit my education altogether and gave up. But I did not give up and completed my HSC despite bullying and the amount of abuse that I get everyday at school. It knocked my confidence down right through its tears but the music and being in the arts, every after school and weekends saved me and singing too, added to that. It was my escape. At least it gave me a voice to express myself in a way I wanted to and I have the opportunity to work with like minded people and all sorts and was used this time to escape bullying and the abuse and to also master my skills as a performer and the arts, as I aspire to be a performer and that was what I am working on to achieve my goals at the time.

Connect with Ana

Twitter:@an_nah

Facebook: anatheonenow

Youtube: anlahmusic

Guest post from Ethan, Eli and Jodi: Autism's other half.

My Facebook friend Jodi has contributed another post this year but this time her boys have written it themselves in words and pictures. People often describe autism as isolating; but isn't that more to do with society? Eli and Ethan seem to be wonderful companions who complement each other. I know that life isn't always easy when you have kids who are expected to fit in with the mainstream, but I think these boys probably find a haven at the end of each tough conforming school day, with their own brother. Enjoy. 

Jodi, Ethan and Eli

A word from Jodi: 

"At 7 and 8 years old, my boys are now old enough to share their thoughts about being autistic...and we are excited to be able to do this as part of LisaMaree's focus on autism acceptance. To our family, autism acceptance is incredibly important and we like to talk about how it is pretty cool to be autistic.

A bit of background to set the scene: Ethan and Eli are born 21 months apart....they are close in age and are close friends! Ethan is now 8 years old and was diagnosed with autistic disorder when he was 3. 18 months later Eli (now 7 years old) was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified (PDDNOS) also at the age of 3. Eli takes the role of a protector and leader in their sibling relationship. Ethan is happy to follow Eli's lead and they both share a silly sense of humour, as well as interests such as Star Wars, Mario Brothers, Lego. They often play together and are very affectionate with each other ....well, most of the time!"

Here is what Eli wanted to say:

I like autism. Because I love my brother and he has autism. Because Ethan is my brother that I love a lot and he has autism a lot. Also, I have autism.
My super-sense is my strength and my sense of smell and taste. Because I like scents.
Ethan's super-sense is building and remembering things that he sees, like words. Like when mummy said "what was it called again?" And Ethan said "plastic man pudding". (Explanation of context: Eli was referring to a time we had been looking at his superhero cookbook and I couldn't remember the name of a recipe, while Ethan effortlessly drew it out of his amazing visual memory)
It's very cool about autism.

Ethan wrote down his thoughts about autism:

I like to have autism.
I am good at playing with Tonka.
I'm good at knowing music that's good!
I'm good drinking juice aren't I am.
I like watching ABC4Kids 22!!!!!

Even when very little the boys loved getting into mischief together!

Lining pebbles up along a towel together on the beach.

Bubble fun together.

Eli with a protective cuddle for Ethan

Hand in hand walking along the beach - one of my favourite photos because it captures their closeness and affection for each other.