Autism – the ‘Lost Generations’

Artwork by Maria Zeldis

Artwork by Maria Zeldis

Our  societies system of assessing and coordinating services and supports to families and young adults with disabilities has been developed on the basis of a significantly misinformed analysis of what certain types of disabilities actually are and how they occur.

In short this system is fundamentally flawed at its very core. This in turn has caused the denial of services to those with  misunderstood conditions such as Autism and Asperger’s Syndrome, particularly for women and girls.  But it’s not all rosy for boys either, many of whom still miss out on receiving vital medical, educational, financial and workplace supports due to the fundamental errors this system makes in defining and deciding the level of  functional severity required to qualify for support.

As a society we like to think that greater levels of recognition will create greater levels of support and understanding but  in the meantime… we are now facing the largest en mass wave of young adults with Autism and Asperger’s ever to enter into our communities and those young adults need support services now.

It’s not good enough to say that we either don’t qualify for, or have to wait years for support. We need support services now otherwise we as a society will have to own up to knowingly  creating  “Autism’s Abandoned Generations”….

Those whose differences are noted  by professionals yet not considered severe enough, by more professionals,  to warrant  the support that many parents and young adults  with Autism themselves declare that they need.  As parents many of us of have been shouting from every corner of the globe trying to raise awareness of  the ways in which our children and young adults have been made to suffer the ignorance’s  and intolerance’s of a system gone so completely wrong.

We encourage our young adults to speak for themselves and many of them now are, and have been, for quite some time….

The problem is… they are not being listened too any more than we  as parents were listened too when we first spoke up and out for our children.  Politicians and medical professionals continue to ignore the immense and continuously growing body of literature on Autism and Asperger’s written by adults and parents.  It seems that the experiences and understandings of adults with Autism and the parents who deal with the needs of autistic children on a daily basis and who are more often than not well-informed and well-educated, are still not being heard.

The only time professionals seem capable of changing their opinions is after the personal experience of having a family member diagnosed with Autism and even then, for now at least, those brave enough to admit to it, remain either in the minority or are ostracized.  So what will it take to amend this problem and why is there such a horrendous  level of resistance toward acknowledging the diagnostic mistakes of the past (Refrigerator Mothers & other Autism Myths)? Do any of us really believe that  reframing the method or manner of diagnosis within the new DSMV will do anything to address this?  I for one think that it’s time that our young adults and their parents heard the words “Sorry… We got it wrong……What can we do to help”…..  Wouldn’t that be nice?

(P.S.  Yes I know… globes don’t technically have corners!)