Finding A Place

Having a child with autism grants you a place in that community. There are many different camps within the autism community and many different personalities within each camp. We have been firmly in the recovery camp, that is, I believe there is a biological basis for the symptoms collectively described as ‘autism’. I further believe that those symptoms are a reflection of a body that has lost the balance of health – where there are odd immunological responses to what should be benign substances. I don’t know what causes this. I also think that the cause can be different for each child. This, in my mind at least, is one possible explanation for why some children, supposedly with the same disorder, present so differently. Autism is a very loose diagnosis once you realize what is missing from the diagnostic criteria and it has become more so with the adoption of the DSM 5.

Anyway, once you’ve chosen your camp, what then? Well, in our case, we have worked towards recovery and we’re almost there.

Our son doesn’t have –

Repetitive behaviours

Insistence on sameness or routine

Sensory issues

‘Meltdowns’

Avoidance of social interaction

He still struggles with the finer points of verbal interactions and he does love to talk on the subject of his choosing, but, this, I have no doubt will also improve. He demonstrated great use of sarcasm the other day with my sister. He has friends and loves to be with other children. He doesn’t care if our schedule deviates from what he was told. All of those core autism symptoms are pretty much gone.

We are thrilled with his progress. More than thrilled. But, it puts us in no man’s land.

I cannot identify with families with children with autism anymore. Those families who are still dealing with so much. They have sensory issues, meltdowns, behaviours that we’ve never seen. I find myself getting further and further away from it.

I feel like a fraud in these groups. It feels wrong. I feel out of place.

Being an autism parent though and having gone through what we have, I also don’t fit in the typical camp. Our son does have differences. My parenting experience has been so vastly different to those parents that I feel like a fish out of water. My experience on this journey has taught me so much, but at the same time, I cannot unlearn what I have acquired. I can no longer trust our government scientists. I will never be able to vaccinate my son as if none of this had ever happened. I cannot go back. Nor can I ever switch off my ridiculously alert state. I am constantly on watch watching for children who are unkind or bullying – those that notice that our son still has some differences and move to exploit them. Sadly, there are some children who are so politically adept even at a young age that they will.

Visiting with friends from my college days has reaffirmed how different we all are. Some of them are so blissfully ignorant of anything we have experienced. Not that I would wish any of this on them for a second, but, I rather wish I could acquire a memory charm and forget it all. I wish I didn’t even have to consider how the pharmaceutical industry is a nasty, toxic lobbying giant buying off our elected representatives to mandate us buying their products. I wish I could go back to that camp where I didn’t have any reason to question their ‘life-saving’ role in medicine.

When is the government going to start acknowledging that these children are actually sick? When are they going to do some real research into biological mechanisms for both development and reversal of autism? When are they going to realize that caring for these children is going to break their precious budgets.

I also am incredulous at the so called neurodiversity movement. Frankly, the self-advocates out there only represent themselves. They are happy (although in so many cases barely functional on a social level) and good for them. But, to represent that no-one should have access to therapy because they don’t want it is absurd and of course indicative of a complete inability to see another perspective, a core feature of Aspergers. So, not surprising really.

Anyway, back to our strange reality. We are lucky to have friends with children who have some quirks themselves, not enough to qualify for a diagnosis, but, this experience has awoken these parents to understand our situation in a way that autism parents who stick to the book for their approach or those with neurotypical children can never do.

But, this situation is a lonely one. We have friends and family with neurotypical children that will never understand the heartbreak we have suffered, the worry we’ve endured, the work we’ve done. There are many of our son’s friend’s parents who simply don’t know about his history – nor will we disclose it until we’re absolutely sure it won’t affect their relationship with him or us. We also have friends with children who are so severely affected that it feels wrong for us to claim the same diagnosis. Our children are so different. At least though, we have an empathy for their experience that those with unaffected children simply don’t have. Not because they’re callous, but because they just haven’t experienced it. They’ve never had to try and comfort a friend who has so many things on their plate that they just can’t face the world. They’ve never had to try and find the words to express their sorrow when a friend loses a child. They never feel the dread of hearing about another wandering death in the autism community, knowing that there are at least 20 friends that could experience this tragedy first hand if they let their guard down for a second.

Oh for a place to call our own.