My changing son, and what autism might mean to him.

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I am exhausted, which is a good reason not to write a post. But I have so many ideas and thoughts floating around in my head tonight, I can feel them slowly coming together, and it helps to organise my thoughts by writing them down, and especially by hearing the opinions and responses of others to those thoughts. So please excuse me if this post is a bit disorganised, and do feel free to help me make sense of this stream-of-consciousness.

I no longer know how to categorise my autistic son. His autism was once so severe that the speech therapist couldn’t say whether he’d ever be able to speak a sentence (and we doubted it too). He self-harmed, other-harmed, destroyed property, screamed, cried, never wanted to try anything new and would have long-lasting anxiety attacks at any effort to do so. He was astoundingly hard to care for, it was like being trapped in a nightmare that had no end. I don’t think I could ever forget the true horror, I don’t think describing it could ever do it justice.

But now. He behaves beautifully much of the time, with a bit of a naughty streak that you might expect of a child anyway. He struggles with language but he uses sentences and can make himself understood most of the time. He likes trying new things, though he does get caught up in requiring routine and predictability. He is becoming the child I thought I’d never see in him. And I’m really not sure how to think of these changes.

I do think he will always be autistic; that the way he perceives and understands the world is via a mind very different from “the norm” specifically because of his autism. And that perhaps the impact of autism on how he sees the world will always be quite strong because he was once so severely affected by all its symptoms from such a very young age. I don’t think of him as a high functioning autistic now, though compared to how he once was, he might be considered that. And I suppose that is the correct focus for me; comparing how he was to how he is now. Figuring out if someone else’s child is more or less autistic than my own increasingly feels like a fool’s game, with no real benefit. All I need to know as his mother, is that my own son is improving.

I dare not call him “mildly autistic” even though that’s closer to the truth now than severely autistic. It has been a while since I did call him severely autistic; I tend to leave off any descriptor other than “classic” autism, which remains accurate. I’m trying to understand that fear over using a gentler describing word, like “mild.” I think it’s partly a worry that people will not treat him with the extra consideration and support he needs otherwise, but that’s probably the old me speaking; the me who had to fight to get him the help he needed and now has. I also think it’s partly because I took so long to understand and come to terms with what it meant to be a mother of a severely autistic child. I know a part of me is also worried that if I get too hopeful or complacent, that I risk utter despair all over again as reality comes crashing down; no point dreaming of rainbows when you’re still facing the storm.

I know his autism affects him in waves; some weeks are good, with challenges everyday but ones I and he can handle. Other weeks, the challenges are so intense that the old hopelessness and worry for his life, pulls me under again. But there is that overall strong trend of improvement that keeps me going through the worst times.

I often wonder and worry about his life ten years, twenty years from now. Will he be able to have a job, a girlfriend, have children? Will he be able to buy his own food, wash his own clothes, drive a car? But I remind myself; he is five. Only five. If he has come this far in the space of two / three years, who knows where he’ll be in even one more year. I don’t know how severe an impact his autism will have on his future, and worrying about it distracts from the here and now, which is where my mind and efforts need to be. The more I focus on helping him right now, at his current level of development, the brighter I can help make his future too.

So yes, I think he will always be autistic as such, but I think the import of that statement will lessen over time for him. He is getting close to the point where I think he will notice and ask about his differences from “normal” children, and I suspect the way I explain his differences to him will be very important to how he views himself and his potential. (I think about the conversation a lot, if anyone has any helpful links about how to explain these things realistically and kindly to their child, I would be grateful for the guidance.)

Which is to say, it will come to matter less whether I see him as lower or higher functioning, and it will matter more how he views himself. I love the idea of that shift; that he will be able to comprehend and consider what autism means, and the most important battle will be his to have. Not because I think my opinion of autism won’t matter or affect him, of course it does. And not because I look forward to his potential struggles to make sense of his differences, of course I don’t. But because he will be capable of having that conversation with me, and his own opinion of himself will take the rightful place as fore-front in my views of autism. What an amazing thought; to know what he thinks of autism someday.

The very idea just leaves me breathless.

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15 Responses to My changing son, and what autism might mean to him.

  1. Jack (Wife of Jack) says:

    Good news that your son has made so much progress. The future is a mystery as it should be with any child. Our son is making positive progress too. He has made big gains in some areas astonishingly quickly.

  2. Sharon says:

    I cant offer any advice as we are at the start of our journey and Harri is only 2. But like you I have had the pleasure of watching his progress over the last 12 months and have pondered how to frame up Autism when he gets to a level of awareness to ask. I am optimistic about the prospect.

    I am really glad to hear how far your young son has come.

  3. As they say, autism is a developmental disorder. I guess that is what is so hard for many of us, not knowing how fast our kids will catch up. Tony Attwood says that kids with Aspergers often catch up in their 20s, I believe Temple Grandin said she felt she caught up when she was in her 40s. All I know is that like your son, my son has made some amazing leaps in development, and at 14 his Aspergers is no longer the most difficult part of him; his hypermobility syndrome is now the most debilitating thing he has to deal with.

    One of the other difficulties with this uneven development patterns is that some of the interventions that people swear by but have little proper evidence to support them, can appear to have spurred on a development spurt, when in fact it could equally well have been on the cards anyway.

    From one tired mother to another, lets hope we both get some quality sleep soon!

  4. nostromo says:

    Great post, its like your reading my mind, I’m daring to have some of the same thoughts about my son too, some significant improvements here in some aspects of my boy.

  5. I can’t say anything helpful, although it’s great to hear about the progress your son has made. I’m in the thick of despair again and worrying that we’re going the opposite way to you. Nothing seems to help. The behaviours are getting stronger, worse, unstoppable…. What have you tried? What do you think has made the most difference? As you say, it’s awful to compare, but I’m drowning here and want to help my son. xx

    • Dear Kristina,

      I am so sorry to hear that things are going poorly. Best I can say is what my own experience has taught me about dealing with autism. These may sound trite but they do appear to be true: It’s two steps forward, one step back. So even though you’re very likely to be making progress, it can be hard to see it when you’re drowning in the “one step back” bit; ie when things actually get worse in a variety of ways. I found it really helped to keep a diary of problems and milestones / improvements, to remind me of where we were and how far we’ve come. It’s also a great way to keep track of what you’ve already tried and what your son responded to well (and not so well).

      Another thing to keep in mind is closely related to the “2 steps forward, 1 back”: That when you make little break-throughs you’ll often see a shift of worsening behaviour in other areas; it’s been described to me by one therapist as “when you open a door in the mind, a window blows shut in another part of the mind” (or similar). What she meant was there are reactions – often unforeseen ones – to our efforts to help. And to try to not let those blown open windows make us think it’s all back-firing. Trying to take a step back and break-down – as much as possible – what happened and why. You may come to find that the worsening behaviours are actually signs that the efforts and improvements you’ve made in other areas are actually starting to impact on the child, and the child is in the process of adjusting to his new perceptions and understandings. That type of growth can be confusing and painful – like how my son went from not understanding emotions to being far too over-sensitive to them, which causes problems for us (some major). The alternative though was him not learning to recognise, respond to and understand emotions. So though his behaviour got worse, it was because he was advancing in his awareness. I really hopes that makes sense. I’m not trying to say “if it’s bad, it really means it’s good”; I’m just trying to say that sometimes the worsening happens because a break-through is underway in other areas of the child’s life.

      If I had to pinpoint the most successful and helpful strategy that helped my son, I’d say speech therapy, but specifically the use of PECS. Ever since his communication started to build up, his ability to understand the world and what the world needs from him to give him what he wants, has also grown. I have always felt, and still feel, that communication (need not be spoken) is the key to improving the other autism issues (behavioural, senses, social interactions, etc).

      All the best, I sincerely hope things get better real soon, even if only a little bit xxx

  6. Aspergirl Maybe says:

    I think the word you are looking for to describe your son may be moderate. It sounds like your son is on a similar path to what we have experienced. Although the specifics varied, my son was much more impacted by autism when he was 2 than he is now at 9, but he is definitely still autistic. It definitely is a shift for us as parents.

    I don’t know if you have heard of person-centered planning, but one thing I really like about it is that it helped me focus on not just my worst fears, but also my greatest hopes, and plan for both accordingly. While it’s not good to ignore or stuff the worries, it’s also not good to focus on them to the exclusion of dealing with where you are now. (I’m not saying you are doing that, actually it’s something I had to learn myself.)

    • Hi Aspergirl Maybe,

      Yes, you’re quite right about the word “moderate.” “Mild” doesn’t sound or feel quite right, and “severe” is no longer accurate. “Moderate” does the job (I should have pegged to that as I was writing the post, I blame it on the exhuastion!)

      And no I hadn’t heard about person-centered planning before, I’ll definitely look it up; thank you!

  7. Thank you! It’s hard to see the wood from the trees sometimes! You’re right about doors opening and windows blowing shut – really like the idea of keeping a diary of achievements/disasters(!!). Have also decided that I need to enlist some extra help in the holidays – single-handedly caring for 2 kids with ASD for 7 weeks is enough to send the best of us a bit loopy!!
    Thanks again.
    K xx

  8. danielle says:

    how old is your son?, i was just skimming through your post i have asperger’s syndrome.

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