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.
