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Friday, January 6, 2012

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'.

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,


  1. Grief takes on a number of forms, and I always got the idea that Jim was talking about a very specific type of parental grief: the loss of that "typical" child or parenting experience one was expecting. If you've ever read that horrid "Welcome to Holland" essay, it would be the grief at not going to Italy like everyone else. Unfortunately, there ARE a lot of parents who do this, and project it upon their kids.

    Please correct me if I'm wrong, but the grief you seem to be talking about is more linked to the actual struggles that your son is facing, right now and possibly into the future. As a parent, I totally get that. I have the same worries about my own son, who is far more challenged than I was at his age.

    So, to be honest, I don't think you and Jim disagree much at all.

    A somewhat-related side note: One thing I see a lot in the online autism community (and to some degree in real life) is the tendency to view everything strictly through the prism of our own struggles. This applies to both parents and self-advocates alike. As someone who is both, I see validity in both points of view and would urge everyone to resist comparing them.

  2. In reply to outoutout,

    It's clear from Jim's letter that he is equating parental "grief" with lost expectations for a normal child, he hasn't left the room you've read into it; that there are many reasons for the parental pain. That comes through quite strongly from Jim's piece.

    Also, this post was clearly a reaction to Jim's letter to parents; it is a reply. I don't think the admonishment to not compare points of views is relevant to the post since this post is expressly pointing out the discrepencies that appear in someone else's piece. To say nothing - to expect the posts' author to not respond and correct the misunderstanding and misrepresentation of what parents are going through - would be far worse.

    I also don't think you can call the disagreements as mere comparisons, since they go to the heart of what it is actually like to raise an autistic child. To claim someone else is purely (or even largely) driven by the feeling of a loss-of-normality, can be factually incorrect; that's not merely a difference in points of view.

    All that aside, brilliant post as always TTT, you speak from my own heart too. Thank you for putting it into words so well.

  3. outoutout thanks very much for taking the time to comment. I completely agree there is validity in all points of view (with a few exceptions perhaps:) I think the problems emerge when we make assumptions about peoples experiences and responses, rather than really hearing each other. The most validating thing we can do for each other is listen. That does not always mean agreement though. I also completely agree with you that this is made difficult by the fact we tend to view the issue through our own struggles. And lets acknowledge that those struggles are enormous for many, and so they may not have the emotional fortitude at this point in their journey to be present enough for others to just listen.
    I suppose why I have some issue with Jim's letter is it does seem to make presumptions about what is fuelling parents grief responses. I agree with him in that some parents would do well to hear his words, but at least in my little world that is not the over riding issue parents are grappling with. I suppose I would have liked it if he were more specific about his intent, as it does read to me as a general statement to any parent who is sad about their child's condition and all that entails. Perhaps you are right though, it may be aimed only at those who are stuck at the grief of diagnosis.
    Thanks again for stopping in.

  4. Thanks A&O your kind and thoughtful words always add a moment of happy to my day.

  5. @autismandoughtisms - Hi, I was careful to use the words: "I always got the idea Jim was talking about.." because, of course, I'm aware my view is only personal conjecture. As is yours. You're right that Jim didn't specify a particular type of parental grief to the exclusion of others, but I'm not so sure I would jump to the conclusion that therefore he really meant *all* parental grief. Again, just personal conjecture. Unless and until he clarifies, we'll never know, but I guess I prefer to give the benefit of the doubt.

    I was also careful to qualify my last paragraph with the words "On a somewhat-related note" because I wasn't specifically addressing Sharon's reply. I think that many disagreements in our community stem from both conscious and unconscious comparisons between "us and them". You used the negative word "admonishment" to describe my suggestion, but I wasn't meaning to admonish and am shocked that it came off that way. It was just a suggestion.

  6. Hi outoutout,
    I wonder, if Jim intended to address a particular aspect of grieving why he wasn't more specific? If he was targetting parents who were stuck at diagnosis then perhaps it would have been pertinent to clarify that?

  7. Autistic people are always right. Not in the NPD way of thinking we are right, but we really are always right - within our subset. Jim is autistic but male, his experiences are different to mine, etc. His reality is right.

    Here is my reality (note that I am right ;) ). I often grieve that my child is too much like me. No bed of roses, this life. I don't wish it upon the person I love the most. I want her life to be happier and better. That is my grief - that it is a difficult thing to provide, and that I may not succeed, and she will suffer. I grieve for the potentially fulfilled person that can make ALL her dreams a reality if she tries hard enough.

  8. I forgot to say that communication is difficult for autistic people, and that what we write or say and what we mean sometimes doesn't match up exactly. That is always worth bearing in mind when reading posts by autistic people.

  9. Ajax I share the feelings you express about wanting your child's life to be happier and better. My oldest (NT) is 19 and even now I watch her closely for signs that she is happier than I was at that age. Mainly because I was miserable for a long time and I can't tolerate the thought of my children having to carry that same emotional burden, autistic or not. I really get that point. And I suspect that's why for me I find it particularly difficult not to worry for Harri. When his hurdles are that much greater, and life is so bloody hard anyway, I fear I will not pass on to him the resilience needed to make it through the harder times in tact.

    As for your second point about communication, I often ponder this. I don't know how best to move beyond ponderance.

    I'm glad you commented. I hoped you would.

  10. @Me - Hi Sharon, thanks for your kind response. As to your question, I'm thinking that back when he wrote it in 1993, the general 'autism conversation' (what little conversation there was) was all about tragedy and mourning. Not that these aren't valid emotions, but perhaps he was trying to counterbalance that a little bit? Or, perhaps, like many on the spectrum, he's had personal experience with being made to feel like his existence was a disappointment; e.g. if only he'd been the NT child his parents really wanted. I don't know, it's wild speculation, but there ya go.

  11. @Ajax - Your post about not wishing "this life" on your child made me sad. I don't know why... maybe I'm seeing my own father, who is also an Aspie, and wondering if he ever felt the same way about me. I hope he didn't. I guess I avoid thinking in those same terms about my kids, trying to convince myself that it's a different time and place and they're getting a lot more support than I ever did. Plus, being NT is no guarantee of a good life either (looking at my n'er-do-well younger brother). I don't know. We all have different realities. It's a struggle for sure. I truly wish you all the best.

    Re: "I forgot to say that communication is difficult for autistic people, and that what we write or say and what we mean sometimes doesn't match up exactly. That is always worth bearing in mind when reading posts by autistic people."

    Yes, very true, and thanks for saying that. There are some autistic writers out there who seem to express themselves quite well; sadly, I am not one of them. My thought processes are often quite jumbled and disordered, and getting them together in some sense of coherence takes a lot more effort than people realise. I guess I would say to all, please be patient with me? :)

  12. outoutout I once again agree with you that his intention was to provide a counterbalance to what he perceived was a serious issue. I suppose I just think that it was perception as opposed to reality, yet dont doubt he must have encountered enough parents running the 'woe is me line' to have thought his point was valid. I suppose my post above is a counter counter balance :)

    And I really appreciate that you made the effort to share your thoughts here. Thanks again.

  13. Hmm.

    I think "grieve" is a pretty specific term that signifies loss. The only time I ever "grieved" during my autism journey was when I was exactly the sort of parent Jim Sinclair was talking about. But I can understand that is my personal experience. I get sad and I get frustrated and I know autism is affecting my child in ways that makes life more difficult. But I don't grieve, really.


    I think outoutout might be on to something with the mention of the time period. Our understanding of autism has changed a lot since then. I think acceptance probably WAS less common; people knew less about positive outcomes; the WHY's of behaviors were less understood (probably because self advocates were dismissed and even some on the spectrum with better communication skills went undiagnosed and unrecognized)...

    But, to be honest, a lot of this "curbie rhetoric" so to speak is still pretty prevalant. I still encounter a lot of parents who think their child is "trapped inside" and "watched their child slip away" and "lost the happy little boy they once had." You are right; I think, at this time, they are not the majority. Perhaps they were, tho, at one point.

    Still, I think, since Jim Sinclair's words are very famous, a response could totally be warranted. I don't know. I get where you're coming from. I sorta get where he's coming from, too. :)

  14. Hi SS, interesting comment as always. Yeah I think I get where Jim is coming from too. I just think the parental response to a child's autism is a broad one. And our pain is not based on one hurdle, that once overcome, namely acceptance of dx, then everything is fine after that. I know that's a gross generalisation of what he says but there is an implication in there that the greatest hurdles are within the minds of parents, rather than within the disability and the way it manifests.

    Also my son was born autistic, but I can completely understand how a parent whose child was apparently developing normally then regressed would feel as if the child they knew had slipped away , or they lost the child they had once had. I think that's an entirely understandable response. Regardless of whether it's helpful or not.
    Thanks as always for your comment :)

  15. Me, I usually don't say my opinion on things but for some reason this post has me thinking very deeply.

    I just want to say that I like your post Me.

    I read Jim Sinclair’s article a long time ago and struggled to understand it. I have just re-read it as part of your post. To me it doesn't relate to the way I feel about things or even what I thought when my son was diagnosed with autism.

    I would like to quote the following from Jim Sinclair's article:

    ... "This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

    Therefore, when parents say,

    I wish my child did not have autism,
    what they're really saying is,
    I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."...

    I would never in a million years wish that my son didn't exist, however I can honestly say that I truly wish he didn't have autism.

    I'm sure that he would be a happier boy if he didn't have all the problems that he has had due to autism.

    I do not grieve for myself that I didn't have an NT son. I grieve for my son everytime I see him struggle with things. I wish he didn't have autism for his own sake not for my sake.

    If my 9 year old son didn't have to have to spend so many hours in therapy learning how to communicate and play and if he didn't have toileting problems etc. If he didn't have to spend hours seeing a psychologist to help with anxiety due to autism, not to mention so many other issues he's had. I'm sure he would be happier.

    So as a parent of a boy with autism when I say I wish he didn't have autism, that is exactly what I mean. I do NOT mean I don't want my autistic child to be simply swapped with an NT child. I love my child with all of my heart and would love to see him happy without autism.

    I really don't like the way he assumes all parents would want to swap their autistic child with a completely different NT child.

    1. Hi Penny,

      I hope you don't mind me asking, but I'm genuinely puzzled by what you mean when you say:

      " I do NOT mean I don't want my autistic child to be simply swapped with an NT child. I love my child with all of my heart and would love to see him happy without autism."

      ...but by definition, a child without autism is an NT child, right? So if you subscribe to the idea that autism is an integral part of a person (not that you do, but that's the philosophy behind Jim's view), then it would logically follow that taking away "the autism" would mean being a completely different person.

      Or are you really saying that you wish he was the same person but without all the struggles that he has?

  16. Penny I'm glad you took the time to comment about this. I know a little about the very serious struggles your son has endured in recent times and my heart breaks for him. Your grace during these times has been something Iv'e admired. AS Iv'e said previously it's not fair to tell parents they can't express these very real feelings based on very real suffering.
    I'm hoping your precious boy has a better year ahead for him.

  17. I've just read "The Horse Boy" by Rupert Isaacson. There are many things about the book that I'm deeply uncomfortable with, but I respected Isaacson's very clear distinction between 'heal' and 'cure'. He is adamant that he did not end up looking to 'cure' his son, for all the reasons Jim Sinclair states. However, he wanted to 'heal' him of the sensory extremes that caused him pain and the emotional meltdowns that sometimes consumed him. I think that's a valid distinction. It certainly resonates with me.

  18. bbs mum I think that does help get to the core of the issue which is that we don't want to see our children suffer, and when their suffering can be attributed directly to the symptoms of autism it is natural to want to eradicate those elements.
    Hope things are going well for you. HNY!

  19. @Me and @bbsmum -

    I completely agree with the "heal versus cure" distinction.

    In addition to autism, I have selective mutism, auditory processing disorder, communication difficulties and a touch of propagnosia. My older son has crippling anxiety and fear of many 'ordinary' things. If there was a magic pill to take away all of that, believe me we'd be first in line! In fact, there have been times in my life where I've been able to function near-normally with fewer challenges, and that's such an awesome feeling.

    But even without all of those things, I'd still be autistic. My brain is hardwired differently. I experience the world differently - I realise that now (I didn't before). Both of my sons' brains are hardwired differently, too, and differently again from mine. So I think it'd be impossible to take away the autism without fundamentally changing who I am. Because, for better or worse, the way I've experienced the world has made me who I am.

    I should probably qualify this by saying that this is only my view, about myself and my kiddos. It's not about anyone else. Your mileage may vary, etc.

    (apologies for the rambling comment!)

  20. outoutout your comment is in no way rambling. It offers an interesting insight. I wonder how you differentiate between autism and auditory processing disorder and communication difficulties though? I assumed the APD and communication difficulties are part of autism?

  21. @Me - "I wonder how you differentiate between autism and auditory processing disorder and communication difficulties though? I assumed the APD and communication difficulties are part of autism?"

    Very good question! To me, it's like differentiating between being biologically female and things like having PMS and menstrual cramps, or going through menopause. All of those things are symptomatic of being biologically female, and can be really hellish for some people. But even if you take them all away - even if you have a hysterectomy, for example - you don't stop being female.

    I read another really good description over on thAutcast recently, in the context of Landon Bryce's response to a post made by Susan Senator:

    "I think the biggest difference between how autistic people and parents see autism is not, as you suggest, that we see it as good and that you see it as bad. I think we experience it as what is: a neurological difference. I think you experience it as what it looks like from the outside: a series of problematic behaviors. Autism is not hand-flapping or being unable to speak. It is the differences in the brain that causes those behaviors to happen. Those behaviors can be alarming and even life-threatening, but they are not autism. They are what happens when an autistic brain has to interact with an often hostile environment."

    Does any of that make sense? :)

  22. I think I understand the point but not sure I agree. When a child screams and self harms, and experiences overwhelming anxiety and subsequent suicidal ideation, then it is mainly an internal issue in tandem with environment. I say this based on self reports.
    Frankly I think parents tend to see autism based on how either they experience their own autism, or their child experiences theirs. It would be a very odd parent who did not feel concern and sadness at the sight of their child's suffering. On the other hand if a child is coping well with their autism, is despite their difficulties generally happy, peaceful, self contained and making progress, it is easy to be upbeat and positive (like I am).
    I suppose what I am saying is although my experience of raising a child on the spectrum is relatively easy these days, as my sons verbal skills improve so does his behaviour and we manage to negotiate our way forward. Yet I am acutely aware of how fortunate we are compared to other families. Families I encounter every day who are living with challenges that are directly attributed to autistic symptoms, such as those I mention above. The environment these kids are in are not inherently hostile. They are simply overwhelming for a neurology that is unable to process and integrate so much incoming sensory and cognitive information. Parents are not always projecting their concerns onto children, they are merely observing their children's pain and responding accordingly.
    And I can't help but point out Landon is not a parent...let alone a parent of a child with autism.
    Autism may not be hand flapping or lack of communication but they can be symptoms of autism. And it is associated behaviours we use to give a diagnosis. If you don't have the disabling features of autism then you don't tend to qualify for the diagnosis. So I'm not sure how you can separate them?
    I really appreciate that you keep coming back and allowing us to stay engaged in this dialogue. Thanks xx

  23. "Autism may not be hand flapping or lack of communication but they can be symptoms of autism. And it is associated behaviours we use to give a diagnosis. If you don't have the disabling features of autism then you don't tend to qualify for the diagnosis. So I'm not sure how you can separate them?"

    I guess I see the separation as being between a medical diagnosis based upon the external observance of 'a series of problematic behaviours', and the actual differences in the brain which (as of yet) no one has found a way to accurately measure. If I were to take a pill that would take away all the symptoms forever, would it mean I'd lose the medical diagnosis? Maybe. But would it mean I'd be neurotypical? Probably not, because the essential brain hardwiring differences remain.

    I think what is meant by "hostile environment" is not one that is overtly hostile (like, abusive) but one that is inherently difficult to navigate; as you said, with all of the overwhelming incoming sensory information, and also with the pressures to learn a particular way, conform, etc.

    I think you're very right in that one's attitude about "autism" is heavily influenced by how well they/their kids are coping, as well as the level of support they're getting. However, I'm thinking context is essential. Saying "I wish my child didn't have autism" versus "It hurts to see my child suffer with crippling anxiety and the impulse to hurt himself", or "I hate how autism has ruined our lives" versus "I hate the fact that we're stuck in the house all summer long because there are no special needs-friendly activities in our area and the waitlist for respite is months long and I just waited an hour at Centrelink only for those f&()ers to tell me that I was missing some essential form so now I have to make yet another trip to the GP only to find out he's on holidays ARRRGH!" (that's a true story from my life, btw)

    I guess that's why I try to put everything into context as much as I can, because even if I don't mean to project, it can come off that way, especially to the kids. Kids internalise so many things. Autistic adults, many of whom have had to navigate a lifetime of failed social interactions and bullying by peers, tend to internalise these things, too. We also tend to have a hard time reading the unspoken context in other peoples' narratives.

    And then there's the overall image of "autism", which is sadly still heavily negative, tragedy, etc. Many of us feel that. Many of us look at that and say, "We must be the problem" and hate ourselves for it.

    (I sense myself going on another long tangent, so I'll stop there.. :) )

    Landon, I know he mourns the fact that he was unable to be a father - he posted about it once - but I think in that context he, too, was looking outside-in.

  24. The outward behaviours are a manifestation of that neurological wiring. They are intertwined, I don't think they can be separated. I agree that over time people can learn to manage the symptoms of autism, and yet their neurology remains that of an autistic person. But I also suspect that as the person adapts their neurology may also change. After all the brain's plasticity seems to continue beyond childhood. Where's a neurologist when you need one huh?

    As for your points about context. Yes I think that's really important. 100% agree. I suppose that's what I try to be mindful that many parents and their children are in a context that is relentlessly stressful. I'd like to see those families get acknowledgement, support and a lot more understanding. They are doing a remarkable job in circumstances that are overwhelming for all concerned. Some of that is related to limited community services, some of it is related to perspective, and a lot of it is related directly to how autism manifests in their family. Which is directly related to neurology rather than environment.
    Am I going in circles now ::))?

  25. *grin*

    Perhaps there is separation in one sense (that symptoms do not equal autism), but no separation in another sense (that, as of yet, there is no way to make the symptoms magically disappear)?

    I honestly don't know. Some kids may be able to re-route their own brain wiring. However, for myself, most of my progress is learned behaviour and coping skills over true neurological change. There have been times in my life where I've regressed completely - in fact, I've been going through one for the past six years, and it sucks. And there are stories all over the Internet from autistic adults who talk of having to "pretend to be normal" their entire lives. But...OTOH, who knows.

    Also 100% agree that there needs to be more acknowledgement and support for all the people doing it tough. I do...I really do feel for people, particularly as I have a lot of challenges too, although I tend not to address the emotional side because it's too overwhelming to put into words. And I'll be honest, it's hard for me to tell sometimes what people really want: do they want advice? answers? conversation? or are they just venting? I guess I'd make a terrible social worker! ;-)

    I accept that some people simply aren't in the frame of mind (yet) to see autism as anything more than a terrible affliction. That's OK. We shouldn't pretend it's all happy, we shouldn't not talk about bad feelings, but... I dunno... the whole environment should be supportive, in a way that steers people in the direction of healing instead of tragedy. OK, that's a very simplistic view, I know it's more complicated than that.

    Thank you for talking to me. I really really appreciate it. :)

    1. I'm really sorry to hear you are going through a tough time at the moment with the regression stuff. Being NT (shut up Ajax :) I've never experienced anything like that but I'm pretty sure I would be frightened to death.
      I really appreciate given everything else youve got happening that you came here for this conversation.

      Have you read 'The Brain That Changes Itself' by Dr Norman Doidge ?