A Letter to Jim Sinclair.

Not long after Harri's diagnosis of autism I came across this piece by Jim Sinclair titled 'Don't Mourn For Us'.

http://www.autreat.com/dont_mourn.html

On initial reading I was overjoyed that an autistic person was capable of writing something so seemingly insightful and eloquent, it offered great comfort and hope to me by demolishing my preconceived notions of autism. So much so I put a link to it in a couple of older posts.

Today though I find it hard to appreciate the article in the same way. This post is a response to Jim Sinclair, with due respect.

Dear Jim,

If I knew my son was going to turn out like you, intelligent, articulate, self confident and alive, I wouldnt worry and grieve. I dont know that though. I can only speculate, which in itself is a futile exercise. And that future projection is based on what I see before me now. Not on myths about autism, on media reports, on worse case scernaios imagined even. Simply on what it is I see autistic children struggling with, and I find it difficult to see how my child at this point in time might overcome such enormous obstacles. Obstacles that are causing real suffering. If you are not a parent Jim then you may find this hard to understand, but when your child suffers so do you. In an intense, multi layered and agonising way. You'll do anything to ease your child's burdens. Sometimes in ways that are not wise or long sighted.

Presuming my pain is based primarily on a sense of loss of what had been anticipated is wrong. Suggesting it's rooted in the expectation of a 'normal' child, then the difficult adjustment of realising that's not the case is for the most part incorrect.  Sure there is shock and bewilderment. After all few parents are prepared for the challenges caring for an autistic child presents. My grief however is based on the here and now. The observable reality of sensory overload, confusion, frustration, and despair.  It's hard for parents to overcome mourning when each year brings with it new obstacles for our children to navigate.

I agree that perpetual grief is unhelpful for both child and parent. I agree that finding new (none NT) ways to relate to your child, though at times hard, is also wonderfully rewarding and worthwhile. That not accepting autism as an intrinsic aspect of the person is problematic. I accept these points, and have embraced them in the journey of raising my autistic son. But your view of why parents find it hard to get beyond grief appears blurred by a socio political position, particularly pushing for community acceptance which is a laudable goal, rather than an understanding of what it is parents are confronting on a daily basis. It's a macro versus micro thing.

In the same way non autistic people should not assume to understand what existence is like for autistics, those who are not parents of autistic children should not assume to understand what underpins our emotional responses.  Parents will do well to listen to autistic adults such as yourself to hopefully better understand how the world might appear to their child, and to support self advocates as they lobby for social changes that help all those on the very wide spectrum. But likewise, autistic self advocates may do well to listen to parents real concerns and challenges without presuming knowledge of what induces our turmoil.

I appreciate the above letter was written some time ago and your position may have changed since then. But it is still easy to find and I wonder what impact it may have on parents who find it while desperately scanning the internet for autism information? As I mentioned I was grateful to find the letter not long after my sons diagnosis as it cleared away a cloud of misconception regarding what people living with autism were capable of. Since then I have read the letter several more times, and a gradual discomfort has enveloped me as it's content reflected less and less our real life struggles, and those of the many parents I have contact with.

I also don't doubt there are some parents for whom your letter would be well heeded. Who are not coming to terms with the diagnosis given. But my own anecdotal experience tells me that more often the case it is extended family members who are likely to resist acceptance of autism. I have heard many mothers recount stories of pushing for professionals to take their concerns about their child seriously, coming up against family members who attempt to normalise problematic behaviours  and even fathers who accuse mothers of hysterics when they take their kids to professional after professional looking for help, in an attempt to maintain their own denial. There are parents right now being stonewalled at every turn despite their certainty and later validation that their child is autistic. For many diagnosis is a relief.

I fully accept and embrace the fact my child is autistic. That autism is an essential component of who he is. I am not trying to eradicate autism. I do not believe there is a 'normal' child behind a veil of autism, and I think most parents share this position (at least those I know).  But this acceptance has not mitigated his anxiety, frustration, sleeplessness and destructiveness. Time and support from his loving family and therapists will do that. To what extent is unknown. In the meantime I live with my parental response of worry and yes, occasional mourning. As long as my child suffers, so do I.

Warm Regards,
Me.