Perspectives. we are NOT one big “autism family”. Still…

Two days ago, I blogged about Isabelle Stapleton.

Incidentally, there were elections in Australia with the (expected) outcome of a new government that, to be honest, has me worry A LOT about the future where health, education and the general welfare of my family are concerned. While following the events of election day, I also followed the reaction of “the autism community” (parents with autistic children, autistic adults, advocates) to the attempted murder-suicide in the Stapleton family. The ‘community’ is “reeling”. It is also divided.

In brief, some focus on the act committed by the mother (as I did in my post) others have sympathy with her and blame “the system”, ie lack of support. And now the different blocks leash out at each other.

I am writing this as a reminder for myself of what I have already previously observed : we are all different. There is no such thing as ‘the autism community’. Let’s stop pretending there is.

With the stats being what they are (let’s say 1:100 to have an international, not gender specific value), there is no way I have much in common with ALL of the autism parents out there. Other than being a parent to a child with autism, that is.
You don’t know me. We are not “in it together”.

And although I honestly appreciate the insightful blogs of adult autistics, they are not only extremely different than me, but also most probably are very different than my autistic son will ever be when he is their age.

We are all different. We see things different.
We have been through different things in our very different lives. One may feel the pressure of raising a special needs kid getting to them, others might have known the mother from the blog or IRL, so they might think “This could be me one day” (in this case GET HELP). But the other side might feel the grip of fear that eugenics is still a spectre on the horizon and the understanding that parents worldwide kill their own children with special needs is unsupportable for them – because they could be the  victims themselves.

Now as it happened, I too felt some sort of lose connection to it, and the need to comment, to reflect on it, to appeal to parents to stop seek justification for what is an act of crazy non-explainable attempted murder. Psychosis is the only explanation and for anyone who has come close to this, it has nothing to do with the reasons, but all with psyche, trust me.
And I am now over it. I can’t help the Stapleton family. Of course not. I could not then, and I cannot now. Out of respect to Issy, this should not become a political case. Her life has been too public for too long already. Think of her and her family, or pray if you do, her life is still in danger from what i know.

So we are not one big “autism family”. And that’s ok.
Let’s stop judging each other for reactions to what has happened. Look out for those who are close to you, right there and now, and maybe just ask them, are you ok? Be attentive, truly listen, find out how others really feel. Also be honest about it yourself. It is ok to say “I can’t go on no more”. Please keep talking.

ruok-day

That the best we can all do.

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7 thoughts on “Perspectives. we are NOT one big “autism family”. Still…

  1. kelley @ magnetboldtoo

    Years ago a similar thing happened in Australia. The mother suffocated her son and then tried to take her own life. Unfortunately the son died but she was found before it was too late.

    I remember being disgusted and up in arms that a mother could do such a thing. I looked at the then 2 or 3 year old Boo and wondered how anyone could feel like that, Autism wasn’t that hard.

    Heh.

    I got to talk to that mother at a conference and still couldn’t fathom being that desperate.

    Now, with a almost 15 year old who towers over everyone and although would never hurt anyone has meltdowns that can be terrifying to the uninitiated, I fear for the future. Of what will happen to him without me.

    That he cannot function without 24 hour supervision and direction.

    And I understand, DO NOT CONDONE, but understand how a parent could get to the point where they see no other solution.

    For that I blame society for not protecting the vulnerable like Boo or protecting the protectors. I read her blog and saw her be destroyed by the system. I saw glimpses of my own breakdown when all services were withdrawn from Boo, which thankfully saw me turn inward and not psychosis like what seems to have happened with this mother.

    But, for the record, the jury is still out and it could have been a planned thing to kill her daughter and if that is the case, hang the bitch.

    Reply
  2. nikki Post author

    yes, i had read vaguely about the Australian case before. that must be .. odd, meeting a mother like that. I also follow your blog – not regularly enough but with attention because BOY. ..Nemo is only 7, his first reflex is flight rather than fight, but just friday he smacked a boy in the face in class. i am.. attentive to it, but i feel that my own instinctive (and learned) reaction to crisis – a sort of panic slow motion – is beneficial now that i am dealing with autism meltdown. we are all different. i am supervising myself sharply because i have seen crisis, psychosis and violence around me. i can’t say that i could tell the signs in me, but as i said in my last post, somewhere in all that fighting, the healthy flight instinct got lost in that mother. i have too little knowledge of the system in the US and had support only increased, not reduced so far.. sometimes you have got to give up, trust and surrender.
    thanks for your comment, Kelley.

    Reply
  3. Benison O'Reilly (@BenisonAnne)

    There’s no easy answers are there? Having delved into the world of postnatal depression for a book, as well as autism, I can understand how irrational thoughts can appear rational in a disturbed mind. But I do worry that people with autism’s lives are undervalued; the sentence for killing a person with autism (even if severe) should be the same as it would be for anyone – assuming of course it was a rational act.

    Reply
    1. nikki Post author

      I agree, Benison. People don’t ‘just snap’, there is a way into madness..And I find it still hard to imagine the premeditated murder of your own child. But as it can’t be completely excluded either, the investigation has to take it’s course, like for ANY other case of attempted murder. I really hope the girl survives and recovers, though..
      thanks for your comment.

      Reply
  4. Carly

    I really appreciate this post. I do understand how a parent could fall so deeply into depression and desperation that he or she could see this as the only option, and when you add in the mom’s head injuries and constant battering, one can hardly expect her to be thinking clearly. Her family, caught up in the same chaos, may have hoped the mom could handle it, since she certainly tried to look strong. How scary would it be for them to think she couldn’t? And Issy, of course, was dealing with a brain and a body she couldn’t control at all. In short, no one was thinking clearly. It was a tragedy waiting to happen. What I appreciate so much about this post is it addresses the importance of caregivers being honest about their own health and reaching out for help when they need it. I’m the mom of a 12yo boy who will probably be more than 6 feet tall within a couple of years and is already stronger than his older brother and as strong as his father. He isn’t aggressive now, but he was terrifying at age 4, when he actually got a door off its hinges. I’ve fallen into the trap of thinking I could handle more than I could, pretending I was ok when I wasn’t, not wanting to reveal how desperate I was, sleep deprived beyond what any human being could stand and about an inch away from suicide. It started out of intense love for my son, his brother, and a need to protect them and others in the family, and then it was encouraged by the praise I got for being a “warrior” and a “supermom.” The darkness I fell into also fed on my own hubris and fear of being vulnerable. And it almost killed me. That would have hurt my family in ways unimaginable. We cannot, just cannot, take care of our vulnerable loved ones unless we make it a priority to keep ourselves healthy. And we cannot help anyone else by holding them up to superhero standards and expecting them to do what is not humanly possible. They will break. It’s that simple. Thanks so much for your post. I wish you all the best.

    Reply
    1. suburp

      thanks for your comment and your own story. we must not forget to take care of ourselves to be able to take care of others, always. and you know, not all children with autism get more aggressive during puberty. there are many years leading up to it, and how you deal with them when they are younger certainly will help them deal with their frustrations at that age. it’s an ongoing battle, yes, but not one where you should actually ‘fight’.

      Reply
  5. Pingback: Autism: Our Unexpected Gift | Ever So Gently

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