It has been suggested that by naming my book Dealing with Autism, I am wanting to change to change people with autism and that despite raising my son with autism, I have no clue what it is like to live with this condition. Well, I have a problem with those assumptions or accusations. I also have a real problem with the current diagnostic criteria for our kids with autism.
I made this video in direct response to the accusations that I do not understand autism as I do not actually have the condition, but only know about it by proxy. I was told by a high functioning autistic young lady that I had no right to be advocating and that my book “Dealing With Autism” should be shoved…(somewhere) and the book was hurtful because autism isn’t a problem that needs dealing with, she states that “it’s parents like me who want to change people like her, are those who need dealing with”, it’s not the condition that needs dealing with.
Well, firstly how wonderful that she can articulate her thoughts and feelings so well, my son and many others with autism, could never write a message like that. But let’s be very clear here, when I refer to ‘Dealing With Autism’, I do not refer to dealing with his persona; he has the most wonderful personality and sense of humour and every day I aspire to be a better person because he sets the benchmark so high. BUT…my son struggled each and everyday of his 13 years of schooling, we had to deal with autism daily, and we had to deal with a society that was not ready for his difference. We also had to deal with bullying and loneliness. So let’s make this very clear … I do not want to change his amazing personality but I have been Dealing with Autism for 21 years and I do want to deal with and change society’s attitude towards him. I AM VERY passionate about this. So if my passion and drive to help other young people like Richard who have been lonely and have felt ostracised, and who do struggle to communicate and have their needs met, if that offends this young lady (and others who echo her sentiments) then I am perplexed, but my aim is not to belittle her or demean her in any way. My aim in Dealing with Autism is to:
➢ Advocate for early intervention
➢ Demand social inclusion strategies in our schools and society
➢ Demand employment opportunities for our children post school
➢ Insist on their legislated right of equal education opportunities and standards
➢ Insist on a society that is accepting
➢ Empower parents to become stronger and more confident advocates
If these aims in Dealing with Autism irritate her then I am sorry; not for my actions, but sorry for the fact that she is categorised among a group that she should not be categorised with. The new DSM-V diagnostic criteria is too broad. Autism and related conditions like Asperger’s and PDD-NOS have been collapsed into a single diagnosis of “autism spectrum disorder.”
What this means is that people like this young lady who can articulate herself well but probably have social interaction challenges, start to become the voice of those on the spectrum. This is dangerous, because as their voice is the only one that’s heard, the voices of those like my son (and others who are not even verbal), become lost. Eventually, the voice of this young lady becomes the standard and those who cannot articulate, get lost in translation. This then diverts much needed attention, resources and support from those who need it the most.
I do not in any way wish to down play the very real struggles of those with mild autism or high functioning autism or Aspergers or whatever label they prefer, I acknowledge that their struggle is very real. Their sensory and socialisation challenges can be very debilitating, but they do not have the same struggles as those who are on the other end of the autism spectrum.
This is not about who has it worse off, that’s too simplistic, it’s like trying to decide whether someone with a vision impairment experiences greater challenges than someone with a hearing impairment. Both experience significant challenges, neither one being more deserving of support than the other, but they require DIFFERENT types of support. And so do our kids on the middle and lower end of the autism spectrum.