If you ever have the opportunity to discuss Autism with a young child I highly recommend it. I have spoken to children about Autism on a large number of occasions, through various fora. The first time I was asked to do so, about 2 years ago to mark an Autism Awareness Week in a National School, I was very nervous – like how was I going to explain the most complicated, invisible, individualised of conditions to a large group of children under 10.
However by the time the Q&A rolled around I was just gobsmacked, the children were really enthusiastic and so keen to share the story of “my brother does” or “my uncle has” or “my sister finds” with me and with each other. Perhaps even more brilliantly were their questions which were not bound by the political correctness of adults but by the genuine well-intentioned interests of children who don’t think twice of asking “why”. An adults would feel rude asking many questions about Autism but isn’t it far better for a person to ask than to live in the ignorance we too often see in our society?
I left the school feeling excited about the future of the Autism community in Ireland – hopeful that those children, who were so keen to find out how they could be more Autism-aware, would grow up Autism-aware, open to diversity and keen to make the right decisions for those with Autism, should they ever have such an opportunity.
I have felt that every single time I have given a talk to children, and yet recently I have been finding my bubble burst left, right and centre.
In recent times, I have heard from so many parents whose son or daughter is experiencing bullying, isolation or exclusion – while they are still in National School.
This hurts on a great number of levels. Firstly, because if we have children with Autism being knocked down at such a young age, how can we possibly empower them to reach their own potential? How can we ensure that they see past the bullying and the discrimination to their own dreams and opportunities?
However, where it hurts even more is where I feel it is coming from. A good charitable organisation, unlike a for-profit organisation, doe not dream of being around and leading forever. The aim has to be redundancy, you might never get there but you must be committed to pursuing your vision to such a degree that ultimately you are no longer required because it is reality.
That is why we work with children and young people. Yes, we work in with businesses, organisations and state services, in other words adults, to try and make our communities more inclusive today but what we are really interested in is what can they become if we can teach people to understand Autism from a young age. We have met great openness from so many adults, but their generation certainly didn’t learn about it in school so we wonder what can happen if we bring people up educated. We picture this as a more inclusive society for those with Autism – whether that means a person who struggles socially can be accepted by a group of friends or a person with very significant needs gets the respect, dignity and care they require and can play a full part in their society, as per their needs.
I believe this is possible. I also believe our role is to reinforce reality – people are not born to exclude, it is a societal construct. That is what is hurting us at present and it is hurting because we are seeing it before our eyes.
How am I one day meeting a group of children who, by the end of the session, are so enthusiastic about including people with Autism that they are hyper, and the next speaking to a mother or father who are already seeing their son or daughter be left behind, have no one to sit with in school, be excluded from parties and events or even, in the worst of circumstances, facing bullying or self-harm.
The reality is we need parents to step up and play a bigger role in preventing exclusion and I don’t mean the parents of children with Autism – I mean parents of neurotypical children.
Let me be clear, I am not suggesting that the parents of neurotypical children are responsible for the problem but that they are a key part to the solution which is being lost at present. AsIAm as an organisation is proud to have been one of the first to really prioritise peers as a stakeholder in the successful education of a person with Autism, but its becoming more and more apparent that other parents are equally important.
This is for so many reasons.
First, travelling around the country I still meet people who believe and fear the most bizarre myths about Autism – I once heard the story of the neurotypical mother who feared their child could “pick up” the behaviours of Autism by playing with a child on the Spectrum. I hear the bizarre stories on the “cause” of Autism which range from the sublime to the ridiculous and I still hear statements like “I know he has Autism but” or “sure God love him” or “I think his mother needs to”. I don’t neccesarily blame the adults I hear saying this stuff for their lack of understanding, you don’t learn if nobody has tried to teach you, but at the same time it is very dangerous if children are hearing these mistruths about Autism and believing them.
Of course, Autism is invisible and this too leads to problems when other parents don’t understand – the mother who hears her son say “he’s strange” for the first time may simply accept that at face value or how many times a day do we all cringe when we hear someone be described as an “odd ball” or “weirdo” who we believe or know is actually just a person who Autism who thinks a little differently.
Once again this language is cancerous in our society and causes enormous damage to young people with Autism
Finally, with a lack of awareness comes discomfort or even fear. I see this all the time – maybe a school wants to open an Autism class but faces huge opposition from the parent body or a boy would like to include someone with Autism at his birthday party but his parents are less comfortable.
We mustn’t be embarrassed by diversity but we are because of a lack of education.
Anytime I have spoken to adults through our AsYouCan campaign I have been met with such openness so why are we leaving out those who play such a role in the lives of children with Autism. By just talking we could create a situation where other parents are encouraging their child to be inclusive, are correcting any negative language and are no longer afraid to be open.
Of course, not everyone will join us but if we begin to engage people, others must follow and at least nobody can ever say they were not told.
Next September, I want us to be starting an Academic Year were we engage not just students but families and by extension communities.
We need your voice though. As a person with Autism or parent please send us your thoughts in letter format, as though we are the parents you want to teach, starting with “Dear Mums and Dads”, you can feel free to exclude your name and we will contact you to discuss what we are hoping to achieve with the project. You can send your submission to firstname.lastname@example.org and we will be in touch!
Thanks and talk soon,
Image courtesy of Master isolated images / FreeDigitalPhotos.net