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Friday, October 14, 2011

Is Acceptance a Lack of Hope? And Vise Versa?

I recently read this lovely post at the following blog, which looks at notions of hope.  I find the idea of hope a particularly interesting one for parents raising children on the Autism spectrum. Uniquely so as the developmental course of any one Autistic child is impossible to predict. This leaves a lot of room for parental projection based on hoped for outcomes. I think there's great value for parents in contemplating and being honest with themselves about what long term hopes they hold for their Autistic children.  I suspect for many of us it's a crucial aspect in understanding how and why we as parents respond to the journey our kids are on. Not making sense? Let me elucidate.

In the year since my sons diagnosis of an ASD Iv'e never considered the possibility of recovery. In fact I wasn't convinced it was even a reality. I suspected that any person who became indistinguishable either did not have Autism to commence with or had learnt to hide their neurological differences, yet would still be Autistic. Regardless it seemed such a remote possibility I paid no mind to the concept. This means I try to carry no expectations beyond the idea there will be progress for Harri, both as a natural part of ageing and learning and as a consequence of therapy. What that progress will look like is unknown but there are good reasons for optimism as we have an early diagnosis coupled with a fast learner and smart kid in him. I feel that as long as I can find acceptance of where he was and wherever he ends up, that is in the best interest of my own state of mind and Harri also. I think if I set high hopes, they might drive me to have unrealistic expectations, which may lead to disappointment, which would ultimately be unfair to him.

Then during a meeting a month ago with the program co ordinator at Harri's therapy centre, she used the recovery word. I can't recall the exact sentence, but it was something like "when a child is in recovery...", said as we were looking at Harri's monthly data sheets which track his progress. Now some parents at this point might have pounced on the word. Asked the therapist to clarify what she meant. Was she suggesting we might be witnessing a trajectory that indicates potential for recovery from Autism? But I didn't. I froze. I tried to block the word from my mind and focus on the remaining conversation. I don't want to hope for recovery. I find the idea anxiety inducing and fraught with problems, as explained above. How could I not feel disappointment if I pinned my hopes on that concept only for it not to eventuate? And how unfair is it to have that expectation placed on my child? Yet I am aware there are others who actively pursue 'recovery' as if it were the only acceptable outcome.

I know there are parents who would give a limb to be in my position regarding Harri's progress to date. I'm really aware of that. And for that reason I considered not mentioning this topic of recovery at all, as it does seem insensitive towards readers who face an inevitable, lifelong commitment of caring for their child/ren. And their hopes for progress are based on outcomes I now take for granted, such as verbal communication. But I wanted to use this idea of recovery as an opportunity to kick start a post about hope and expectations, and how they can impact in not so positive ways. I understand this topic is more multi layered than I will do justice to here. But I believe there is value for all parents of children with Autism in asking themselves what hopes they hold to, and how that may affect the ways in which they relate to their child. Iv'e personally found it to be a valuable exercise.

I share the story below of how hope led to wrong decisions according to this father.

So how can we, as parents,  hold expectations of development for our children that are realistic and don't lead us down paths that prove to be ultimately futile and heartbreaking. And in many cases harmful for the child. How do we not set ourselves up for disappointment unless we take a pessimistic point of view in order to be pleasantly surprised? I suspect essentially it requires a zen like acceptance of 'now'. Which is incredibly difficult when it comes to our children. Not looking too far forward, but going with our kids, assisting them and adjusting supports and services when necessary to ensure best outcomes. Whatever those might be.

Personally 'normal' or indistinguishable is not a goal I hold for Harri, as I have written on this blog previously. I refuse to entertain that idea, no matter what his therapists might think or say. They can afford to speculate and set their expectations as high as they like. Right now I am cautious due to his young age to project too far ahead of what I see in front of me today. And based on that alone I am proud of my remarkable little boy. If I was fixed on the future and hopeful outcomes beyond today I would risk missing the wonder and pride I have at really seeing who he is right now.

That's not the same thing as accepting behaviours that are limiting. It's not about taking a ce la vie attitude. I work everyday to ensure Harri learns as much as he can. I'm not talking about hope for improvement, as that's a given. What I refer to is the long term picture many of us hold as to what might be the best results for our children, such as attending mainstream school, living independently, holding down employment and so forth. Hoping for these things may seem natural, yet they also yield insight for consideration. Such as, for who really, is that projected hope the best outcome? 


  1. The term recovery doesn't make sense to me, there is no recovery from autism, but everyone learns, all people learn new skills and new ways to communicate during life, autistic people too, this is not recovery, it's learning.
    Children have less skills than adults, but nobody talks about recovery from childhood, people just learn and grow, sure you don't stop being autistic, but we grow too, people think that every time an autistic person learn things or changes is recovery, I think that is being a person. Sure we learn very differently and we not always reach the same places, but we learn anyway.
    Hope can be dangerous if it blinds a person and stops them from seeing the present and reality, also if it's a hope in a thing that is not good, like hoping for normal, that is harmful, but hope can be good too, if not we would just give up on everything.

  2. Thanks for your comment mybrainyourbrain. I know the idea of recovery is a contentious one. There are documented cases of people/children literally moving off the spectrum, in that they no longer could be considered Autistic by all measurements. I did a bit of reading and one seemingly reputable research paper I found suggested around 10% of people will literally 'recover'. I'm not really comfortable with the term recovery, but that's what 'they' use.

    Its important to understand I am not suggesting hope is bad in itself, but asking people to question what hopes they hold, and may not even realise without consideration, and how that might be influencing their relationship with their child, including treatment choices.

  3. I asked Sunshine what she wanted to be when she grew up. She said "a mechanic". I had to think "great, she will be using 10% of the genius she was given but she will be happy."

    When next she told me she wanted to be a doctor when she grows up I thought "Oh fuck, hope she grows out of that. She'll die from stress."

    My hope is that her life fulfils her more than it hurts her. I'll never give up that hope, and it has nothing to do with fitting in. The fitting in is a side project.

    By the way, my ex used to say "I've never been happier since I gave up all hope." He meant that you meet a lot more of you goals if you don't have as many, and I think my shrink said Jung or one other of the famous shrinkers said the same. So realistically I can expect / demand that my daughter has a better life than I did (until I met her father) and if she doesn't bring home the Nobel Prize I can still be proud.

    Also with this comes the decision, abhorrent to some, to talk her out of having her own biological children. But those adopted kids had better come home with the bloody Nobel Prize.

  4. Ajax said "My hope is that her life fulfils her more than it hurts her". Beautiful. That's precisely how I feel.

  5. Ah, this is the question, isn't it? What should we hope for our kids? When is hope actually denial? Can hope cause you to miss the road you need to travel. Ouch at all the questions.

    When my son was young his language was very echolalic, it was very difficult to do public errands, I spent many family parties sitting under a blanket with him because it was TOO MUCH for him. Now he almost never uses echolalic language and he can come to the grocery store with me if my list is short. I didn't even know to hope for that way back then.

    When we hear the word "recovery" it brings up so much baggage. If only I had done THIS would my child have an easier life?

    Lots of thoughts. I write the Round World Flat Map site, thanks for sharing the link there.

  6. Hi Dixie and thanks so much for your thoughts. Yep it's tricky. I am not a natural optimist so that colours my way of viewing this issue (and everything else of course) . But I see how hope can make people vulnerable. Yet I also see the value of it.