Why I Refuse to Forget the Horror of Autism, aka, Between Two Autism Worlds

Double Helix

Image by millicent_bystander via Flickr

I find myself in agreement with diverse attitudes towards autism, because I’ve lived with autism’s diversities. I have spent years with a severely autistic child who was a danger to himself and myself; who faced a largely non-verbal future with a low chance of employment or independence. And now I am moving into years of having a moderately autistic child who is verbal, clearly quite intelligent, and constantly surpassing everyone’s expectations.

The diverse attitudes towards autism, respond to and reflect the diverse experiences of autism. Sometimes it really is a life-long horrendous disability that drains everyone involved. And sometimes it appears as if a gift; seemingly enhancing the individual and those close to them. In the same way that there are many autisms (or “pervasive developmental disorders” if you prefer), there are also many understandable and legitimate attitudes towards autism.

I am yet to reach the view that a single one of those attitudes accurately captures the entire range of autism, and I expect the changes to the category and types of autism in coming decades will reinforce the legitimacy of the diverse attitudes. I am still to get my head around how that diversity relates to and captures a situation like my son, who like so many others on the spectrum, has gradually progressed away from such scary severity (particularly over the past year).

It is tempting to forget and rewrite the horror of those early years (particularly from his ages of two to four); to instead focus exclusively on the amazing little almost-six-year-old I have blossoming now. To only look forward and be hopeful, and recast autism in the light of who he is now and who I hope he will become. But I fight that temptation for some very good reasons.

First off, what I went through – what my son went through – is what thousands of other families are still going through, and might go through until the day they die. Just because my son improved so much, doesn’t mean every autistic child does (neither, by the way, does it mean my own son will continue at such rates of improvement). If I turn my back on that reality, I feel that it would be turning my back on those families. They need to be acknowledged, understood, and helped. Telling them everything might turn out fine, doesn’t help them manage dangerous behaviours or teach their child to talk or to be social. Focusing only on those who have come through (or never had) the worst of it, shifts the focus from those most in need.

If autism help was a zero-sum game – if there was only so much help to go around – I would always put the majority of it into helping the most severely affected. I don’t personally see autism help (funding, research, attention, services) as a zero-sum game, but I know many do, and so I understand why they get so upset when their harsh realities are painted over by stories that make autism seem benign or mere difference; because it detracts from and undercuts those who most need that help.

So that’s the first reason that I won’t forget the horror; because I think it does a disservice to those still living it.

The second reason I will not forget, is because I never want to go through it again. I am scared of having another child because the child might be autistic, and I barely made it through the first autistic child. Even with everything I’ve learnt – with everything I now know about autism and how to handle an autistic child – I personally wouldn’t do it again. It’s like a dark hole I’ve almost crawled out of, and someone asking whether I’d like to hop back in again, not knowing how deep it might be the next time, or whether I’d ever get out again. We took that risk with our second child, and I’m glad we did. Raising him has been a world of smiles and laughter and relative ease, and his existence has enhanced the life of my first-born too (and a child with very mild autism might have been much the same). I would raise many children like my second son if I had such guarantees. But there are no guarantees, and statistics say we’re at a fairly high risk of having another autistic child, of unknown severity of course. I will not be throwing that dice again.

That, by the way, does not mean I would abort a child if there was some magical way to tell if it was going to be autistic. It also does not mean that I would un-wish the existence of my son, or any other autistic individual. Anyone who jumps to such conclusions is making an unwarranted and far too simplistic leap. I am saying only what I am saying; that I personally don’t wish to risk having another autistic child, not that I wouldn’t lovingly raise one if another autistic child came into my life.

(Anyone who claims that my views equate to aborting or eradicating all autistic people, is being alarmist, ridiculous and distorting my words and concerns; I know that sadly won’t stop people making such claims though. Many people choose to only have one child because they found the first too hard to care for, that doesn’t mean they hate all children nor wish they hadn’t had one at all. Many people don’t want to have any more daughters / sons because of bad experiences with the first lot, that doesn’t make them sexist either.)

So that is my second reason for not forgetting the horror; because I need to remember that I couldn’t face going through that all again. The fact that I don’t think I could cope with it, isn’t just about me either; I am the mother in this family – my mental and physical health impacts on the whole family, including my two current children.

The third and final reason I’m sharing for why I won’t forget, is that I need to remember how far my son has come. Some days, his autism makes him so very hard to manage. It is mentally and physically exhausting, and can leave him unhappy and confused as he tries to navigate this world. Some days I worry so much for his future – his education, relationships, employment – that it’s like a dark cloud tinting everything I see and think about. But I remind myself not to forget how bad it once was because (a) it could have been so much worse than it is right now if he hadn’t improved, and (b) if he continues to improve at even a fraction of the rate he has been, his future might turn out to be a good one.

I try not to get too caught up in that hope, because I need to always respond to the child and the challenges that child has at this point in time; and hope can be distracting, frustrating and cruel. I just take each day and do my best with it; remembering how far we’ve come already does help raise my spirits and put my son’s current challenges in perspective.

So that’s my three reasons why I won’t forget the horror, and why I won’t soften that word “horror” either. It’s important for people to know what families like mine went through. To realise that autism is hard going and those families and individuals need real help and not just pretty words. Though I feel like I walk between two autism worlds – in terms of experiences, hopes and attitudes – I will always keep a careful and understanding eye on the way autism can impact so negatively on so many lives; even as I look to the bright future that would be all the brighter with more acceptance and accommodation of autism. I do not see a contradiction there, I just see the diverse realities of living with autism.

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17 Responses to Why I Refuse to Forget the Horror of Autism, aka, Between Two Autism Worlds

  1. Nostromoswife says:

    Thanks so much for your post, relate to this in a huge way. We are still very much in the ‘horror’ stage. DS 4.5yrs has not made the kind of progress we’d hoped for so I’m terrified for the future. Sometimes I feel so angry and want to go back to all the people who belittled his diagnosis and say ‘see, he’s not going to be alright. In fact he’s very far from being alright.’ I know this is very childish but I somehow want to let people know what kind of hell we’re going through.

    • No, I don’t think that’s childish. I think that’s quite a natural reaction to the frustration of dealing with people who won’t listen or take your concerns seriously. You want them to know that autism is serious, and that they have not appreciated or understood how much it can and has impacted on your family; I still battle with various important people in my life to make them understand that autism won’t just go away, that it’s going to impact on my son in a myriad of ways for the rest of his life. Part of me wants to not care what they think, but the bigger part of me knows their opinions matter and affect the amount of support and understanding I and my son get from them. So no, not childish in my eyes at all Nostromoswife.

  2. Sharon says:

    This post really touched me. Not only will I not forget those impossibly difficult early years with Harri, I couldn’t if I wanted to. To this day I experience the psychological imprint of his babyhood crying as a stress response if triggered. Raising Harri has changed not just my perception of Autism, but my own neurological responses have also been altered. I am forever changed by this child whom I love so deeply. And like you am so grateful to be in a position to report great progress. But I will not forget where we have been. And I will do all I can to not forget or leave behind those who are not as fortunate as we have been.

    • So beautifully said Sharon.

      I thought I’d never forget either, but I find part of my brain wants to hide it away and put it all behind me (I suppose as the brain does with any very stressful situation; protecting us). I’m glad I’ve kept personal diaries and this blog; they have reminded me of so many of the hardships that I’d forgotten about. I find it quite painful at times to recall how dark things got; how each day was me just trying to get him from sunrise to sunset without too many violent tantrums. How I was glad when his bite marks mostly didn’t break the skin. The fear I’d had when he really lost it, and how long it took to get him to calm down. The isolation, and tight repetition that formed the pattern of each day. How each day was a carbon copy of the one before and I was desperate to see him develop, to change, to grow, but everything would stay the same or deteriate. How sad and lost he was, and how powerless I felt to make it better for him. Ugh.

      But I think the more I confront and make sense of what I and my son went through, the easier it will get, and in time the memories won’t hurt so much. It’s part of what drove me to write this post; trying to make sense of the memories and why I feel I must hold on to them instead of let them be forgotten. I suppose it’s cathartic too, the same sort of reasons therapists encourage people to talk about and confront their memories even though it would be easier in many ways to ignore them.

      I know many people take exception to mothers talking so openly about how hard it is and can be, that they think it puts the mother centre stage instead of the child or focuses too much on the negative. But the alternative is our stories and voices don’t get heard, and I firmly believe it is in our children’s best interest – and future children’s best interests – that people understand the level of support and understanding that is lacking and how our experiences as mothers impact directly and daily on our children. If our stories sometimes come out too negative, because the reality was so negative, then the shame is in tidying up and dumbing down what we’ve been through; not in bringing attention to uncomfortable realities.

      I seem to have written a mini post as a reply so I’ll stop now!

      Thanks as always for your comment.

  3. Heather says:

    Thank you for this post. I have a 7 year old son with autism. While he has progressed, he is still on the more severe side. I have watched the other kids that went through early intervention with him race ahead. They were almost the same at 2.5 and now he lags behind. I am super pleased for those children and so proud of them, I constantly need to remind myself that Jack is improving and that is all I can ask for! It might be slower, but when I think back 4 years, I realise how far he has come.
    I have another 2 sons, one was born before diagnosis and one after. It is a huge decision, but thankfully so far son no 2 is fine and son no 3 (although only 10months old) is nothing like his big brother and already has some words.
    Life is hard, somedays I just want to walk away from everything. However other days remind me how special he is and how much he has to teach us. I am scared for his future, so most days I just try to focus on the present as that is all I can handle.
    Thanks again.

    • And thank you Heather, for your honest and heart-felt comment. It can be hard sometimes to say (or write) what we’re going through and have gone through, so I really appreciate you sharing. I wish you and your family all the best going forward xxx

  4. Jim W says:

    Nice post. I still feel very much lost in all this talk of high-functioning and severely affected. My own daughter, Lily, I suspect, falls somewhere in between. I keep hoping some “expert” will materialize during our researches and studies and map out the future for us so I know better what to expect. A child’s dream, I suppose.

    I can’t really relate to the “horror”. It’s been stressful. Certainly to compare the relative stress associated with rearing my two children, it’s been more stressful raising Lily. Significantly more stressful. But not horrible or horrifying. And for that I’m grateful. I’m constantly reminded that things can always be worse/harder than they are. If nothing else, the blogosphere keeps it all in perspective, single moms raising a child with autism not stressful enough? Keep looking, you’ll find a single mom in a wheelchair raising a child with autism. And I do remember (not happily) the anecdotal stressors that drove us as a family early on and continue to drive us.

    Raising Lily has helped me be a more patient human being/parent, a more foregiving person, a more tolerant person. Sometimes I suspect she’s made better and more lasting improvements on my wife and I than all our efforts and interventions have made on her.

    I enjoy reading your blogs.

    • Thank you Jim.

      As to the word “horror”, that was the less emotive and gentler version of the terms that come to mind to describe what my and my son’s life was on when he was at his worst. I think it was made worse than it might have been, because of the lack of support, slow services, and my general ignorance and confusion about autism. Even with the hind-sight though and the better position I would be in now if I was to have another autistic child, I still think the word “horror” / horrible / horrifying comes close to expressing what it would be like to go through all that again.

      I’m always interested in hearing about others experiences, attitudes and understanding of autism, so I really appreciate you sharing yours. And on that note, I notice you have a blog that I haven’t previously investigated either, so I’ll be popping over for a read!

      • Jim W says:

        Well, in that respect I suppose my wife and I have been blessed relative to what you went through. Not to say it’s milk and honey, but sometimes I’m amazed at the supports for treatment of autistic kiddos here in Pennsylvania, USA.

        Please do pop over. I’ve been blogging for years, but recently branched over to doing some autism-related blogs. More day-to-day, slice of life type stuff. . . but everyone can use a bit of fluff now and then.

  5. Seeking quiet says:

    I hear your validation and care for those of us in the trenches. The horror of autism is such an uncomfortable reality. We are now dealing with our 19 year old’s aggression and obsession with food. The difficult behaviors have morphed over the years, but the high-alert stress, the commitment required, the unfortunate limitations have remained a constant. I’d like to say we are all somehow better off or progressing toward something good (straining to find the positive), but my family knows different. Thank you.

  6. Tsara says:

    I love and appreciate this post so much. As a teenager I chose to have three jobs and a myriad of boyfriends, just so I wouldn’t have to go home to my four autistic brothers and exhausted mom. I knew for certain that she would need my help and I couldn’t very well say no… what kind of daughter would I then be?… so instead I stayed gone. I would often wish that my mom could just give in to the powers that be and let other people help more often (therapist, outreach workers) and not be so stubborn about doing it with the right ‘attitude’ and ‘believing in them’. Of course, I’m glad now. Now that three of them are independent and my 30 year old brother still living at home is happy and slowly learning skills because he has always been believed in… but we will never forget the horror.

    My mom’s first book was written while still deep in the hole, still living the life of crazy. In some ways I think it is equally as important a book as her second because, although it doesn’t offer many answers, it validates those fears and exhaustion’s.

    Those were very difficult years, for our entire family. We have learned so much because of them but that doesn’t mean they weren’t hard. Just that we chose to remember the struggle and find the lessons in all that mess. Besides, we could never forget… there’s so much video!

    • lol at the video comment!

      And thank you for sharing your own perspective and experiences Tsara; I particularly enjoy hearing about a sibling’s perspective since I wonder how my second-born will be affected by and respond to his brother in the years to come.

      All the best xxx

  7. dixieredmond says:

    Thank you for writing. 16 years ago when the diagnosis for my son was in process, it was a terrifying time. I turned to the internet to find other parents who understood the journey we were traveling, because there wasn’t anything helpful nearby. I’m doing that again, and stumbled into a discussion that feels invalidating of my experience as a parent. I know that’s not the intention, it’s my feeling, though. My son is an adult now and he has come so far in so many ways and yet there are still major challenges. Sometimes I DO forget how difficult the early years were – how hard it was to protect my second child from my impulsive first child. How I had to be constantly vigilant. It was exhausting and I became extremely depressed because of “no map” as a previous commenter pointed out. Also, the necessity of setting aside so much of what had been normal for me is a loss. I used to be very spontaneous and learned that is not something I can do as much.

    • I resonate with so much of your comment dixieredmond; particularly about the discussions that invalidate our experiences as parents, and the loss of spontaneity in life. I can’t imagine how much harder it must have been 16 years ago at the time of your son’s diagnosis; no doubt a very different autism world than the one parents find themselves in these days. I’m very interested in how those experiences across the generations vary (and how they stay the same) when it comes to raising our kids.

      Thanks for your comment.

  8. I tell people that I am lucky that we got pregnant with my youngest when my oldest son was less than a year old. If we had waited … I would not have my youngest son. The struggles and despair and trials and hardship from ages 2 to 4 overwhelmed me then and overwhelm me now when I think of them. My oldest son is now a little over 6 and has made amazing progress.

    I wouldn’t do it again by choice.

    But I adore all of my children, those with and without autism. And I don’t regret having them. But my god… I understand wanting, and needing, to remember. Sometimes it is easy to see only the daily struggles of NOW and not see how much better things are.

  9. whitepointer says:

    Sick of hearing stupid comments about my grand daughter, “Oh she will be fine, you have to be positive”. I feel like screaming especially when she bites me again. My mother inlaw gives her advice, “that she knows how to toilet train my 4 year old granddaughter”. and that she is like her grandson, my nephew that has aspergers. I try to tell her my granddaughter is moderate to severe autistic, is in a special school and cant talk whereas my nephew went to a normal class, could speak and now works. She dosnt get it. You try to be positive for your daughter whom you know will have years of dramas with her daughter and may have to look after her for the rest of her life.
    I said to some one it is worse than cancer because you have the chance to cure cancer. Some kids make great progress with autistic interventions, other always stay severely aggressive and basically have to go into care after their parents are just about dead from exhaustion.

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