A Bridgeable Divide? The understanding and empathy gap between adult autism self-advocates, and parents of autistic children

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When I began blogging, I hadn’t yet heard of the neurodiversity movement. My first reactions once I encountered it, were a mixture of outrage and disbelief: How could anyone not see autism as a detrimental disorder that is worth fixing? As the months went by, I came to appreciate some of their attitudes and arguments, and realise they in part reflected my own concerns. (Two particular examples of them matching my own existing sympathies, were (1) that certain popular treatments were overly concerned with making autistic people act like robots just so they could “fit in”; that in the process of trying to achieve this outward normality, the happiness and uniqueness of the child was frequently sacrificed; and (2) concern with the view that autism was such a dreadful state of affairs, that trying any potential treatment to make it go away, was worth the risks and side-effects; even when those risks included death, and even when those treatments were as yet unproven (or even disproven).)

There are certain attitudes and beliefs in the neurodiversity movement that I still consider ridiculous and unfounded, and other aspects I think quite beautiful and insightful. I recognise the spectrum within the neurodiversity movement too; one persons’ neurodiverse attitude might conflict with another’s. I can accept opinions and attitudes that differ from my own without considering them a threat to myself or my son, however there is a particular oversight that pits parents of autistic children, against autistic adults who are self-advocates; which suggest ignorance of experience and paucity of perspective, on behalf of the autistic self-advocates.

This is the experience of bringing up a developmentally delayed child; with the sorts of delays that will frequently be forgotten or unknown once that autistic child has become an adult. Parents who are raising these very delayed children, encounter statements like “we must not think of curing the child unless the child chooses it as an adult”, and “this is principally difference rather than disability”, whilst that parent is dealing with a child who is still in nappies years after his peers, a child who can’t speak or communicate (leaving the parent scared for his future in all regards), a child who won’t eat more than one type of food, can’t put on clothes while his peers are playing dress-up with ease, has hourly anxiety attacks or meltdowns. The list goes on.

When talking to these parents – raising children who they are still learning about, in the great unknowns of early autism – it can seriously and unhelpfully upset them to hear adults who no longer face these problems (not in diapers, have found a way to communicate, can dress themselves, etc), saying they are evil for wanting to fix these limitations that are holding hostage the future of their children. From the perspective of those parents, it is cruel to be teased by these seemingly fully “functional” adults, talking about how their kids don’t need serious help (and more than just “societal acceptance”), when those parents know full well that their child may yet end up unspeaking, untoilet-trained, in an institution. It’s disturbing when you’re fighting tooth and nail to get your child the help they need, and here are autistic adults supposedly telling the public that autism is beautiful and doesn’t need fixing. Try changing a five year-old’s nappy, getting bitten by your child everyday, and worrying who will help them get food and get dressed after you’re dead and gone, and then tell me that is “beautiful.”

This seeming gap between the current experiences of parents raising developmentally delayed children, and fully grown autistic adults talking about a pretty unicorn world where if only everyone accepted autism everything would be fine, is so huge that when you’re on the parent side looking over the chasm, the adults on the other side seem to have lost their grip on reality.

This perspective – of the autism self-advocacy adults being out of touch with reality – is made significantly worse when people who are fighting other agendas (agendas such as being anti-vaccine and pro cure by chelation or chemical castration), twist the neurodiversity movement into some warped monster; where brain-damage is encouraged and all treatments to help autistic people are shunned, and all help for autistic children and adults is fought. There may be some people within the neurodiversity movement who think such extreme views, but in my experience, they are exceedingly few, and more often than not the presentation of these views turn out to be caricatures and misrepresentations of views held by far less extreme people within the movement.

Once you become aware of those other agendas at play – and that taking down the neurodiversity movement and people within that movement will serve other purposes – it’s easier to be clear and rational about dealing with the movement, instead of getting all caught up in “defensive parent fighting for my child’s future” mode. Just tease apart the debates, one issue at a time, and remember that even where those extreme views do exist, that they by no means represent the spectrum of neurodiverse attitudes.

There remains though the problem of feeling misunderstood and very much underappreciated as a parent trying to raise these challenging children. What those parents need is information about how they can best help their child to succeed, information about what treatments work and what don’t and why, and support so they can do the very best by their child. They need reality too: They need to know – and have it acknowledged – that their child might not gain fundamental self-care skills. But alongside this, they need to be encouraged and welcomed into a movement that is – at its heart – trying to create a world that will accept and support their child as an adult.

Currently, I still see far too many attacks on parents of autistic children, as easy targets in the neurodiversity battle, even while they’re still coming to terms with what “autism” means. I see parents painted as the enemy for even talking about cure, for crying over how hard it is somedays, for having not yet come to terms with their unexpected new reality. I’ve said it before, and I’ll say it again: If you want to change how they treat their children and think of their children, you need to accept and welcome them with sympathy and open-ness, otherwise you’ll just drive them into the arms of the more welcoming extremists who will transform their confusion into anger and resentment.

I want to make something very clear: I absolutely respect and appreciate autistic adults. I do not underestimate what they have to offer, and do not discount their experiences and perspectives. This post is responding to the people within the neurodiversity movement who attack parents without a caring ear or eye to their very real and daily struggles; struggles that are more than just an “attitude problem” on behalf of the parents.

Those parents are already confused, frightened, exhausted, and in some cases desperate. I am utterly sick of people saying “this is not about the parent, it is about the child,” as if they are insightfully shifting the focus to the correct person. You are wrong. It is about the parent. Because there will always be a parent in that child’s life – even if you took every autistic child away from the “wrong thinking” parent and gave them to a “right thinking” one. Always. That parent is the primary teacher, the primary carer, and best chance that child has. The parent is the voice and the advocate of that child, even if the child didn’t have autism. No advocacy group will ever replace the voice and advocacy of that parent; they can add to it, inform it, but not over-ride it. To attempt to do so is to create an un-necessary enemy where you should have had an ally. And even to create a dissonance between the child and their parent – making the parent worry that their own child could become so uncaring and indifferent to such real suffering, when they become an adult (“so that is what an autistic person turns out like, I will not let my son become so cruel and ignorant..”). I might add that such seeming uncaring also feeds the notion that autistic people lack empathy. (Obviously such thoughts are again ignoring the diversity of attitudes and abilities among autistic adults, but when it’s being rammed into you as a parent that “this is the correct and primary attitude of autistic adults towards autism”, it just feeds such opinions.)

So where does that leave the mess? I think there is a way forward, out of these attacks and misunderstandings, most of which I’ve already signaled in the post. I’ll pull those threads together here:

(1) Autism self-advocates / people within the neurodiviersity movement, need to openly and caringly acknowledge the experiences and challenges faced by parents dealing with a young and newly diagnosed autistic child.

(2) When dealing with a supposed statement about a movement, or someone within a movement, check the sources. People with “agendas” will try to ignite emotional responses that make their readers less likely to listen to other statements made by those people. Make sure you’re reacting to something real.

(3) Avoid talking “on behalf of the neurodiversity movement” or “on behalf of autistic adults.” Recognise that there is a spectrum of attitudes as well as a spectrum of autism. I am just as unimpressed with parents who speak “on behalf of autism parents”, usually said in relation to being anti-vaccine. (In the same breath I of course recognise that many autism parents do not “feel” the way I do about what I’ve shared in this post, my post hopefully never came across quite so arrogant as that.)

(4) Calmly offer information and alternative perspectives when faced with a frantic parent; realise that to a certain extent all new parents are scared and confused, parents of any special-needs child even more so. Do not judge them for being completely normal in their confusion and concerns. Show them the light, don’t shun them into darkness.

(5) Know thy (correct) enemy. When the parents are doing “evil deeds” in a supposed misguided effort to cure their child, remember they are following the “scientists” and practitioners who are taking their money and time. They are often being fed false hope as if it was the only hope for a better future for their child. They are often fed a story where they and their children are the unwitting victims in a conspiracy, making them potential heroes in that narrative – if only they will try this then that then this again. Attack the people getting the money and the fame from spreading the misinformation. When those people are parents – who continuously refuse to listen and act on genuine and verifiable information – then the attacks become justified. In fact, merely being a suffering parent should not – cannot – protect such a parent from consequences for harming their child and promoting harms for other children. I’ve seen parents hide behind the fact they are parents, to launch unrestrained attacks on opponents, and to discount attacks by non-parents (again, merely because their opponents are not parents). Being a parent is not a get-out-of-jail-free card for nasty ad hominems and science denial.

I know some people will disagree or take offence at this post, and I’m quite OK with that. My intent is not to “avoid offence” or to cause it either, just to add some thoughts to the endless debate. Please at least let me know specifically which parts bother you, and – who knows – you might even change my mind and open my eyes. But try to do it nicely, if possible; you’re far more likely to get through to me if you do it with a smile than with a fist.

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13 Responses to A Bridgeable Divide? The understanding and empathy gap between adult autism self-advocates, and parents of autistic children

  1. KWombles says:

    Excellent post with lots to chew on.

    • Ta Kim.

      I’m still getting my head around all of it, and trying to fully understand and appreciate the huge variety of responses to ND (and indeed, differences within the ND camp). I’m not even sure where I sit in relation to it all. I am aware that my own attitude has steadily shifted more towards “acceptance”, but not in a resigned fashion (“oh well, this is just the way he is, what’s the point of trying to change him”), more so acceptance that he will always be autistic and that’s not such a terrible thing. I’ve been planning to do a post on acceptance because I think that word is used is a variety of ways which adds confusion to the whole “disability and/or difference” debate. Still nutting my head around the details of that post.

  2. nostromo says:

    Arrgh, the nuerodiversity movement when I first encountered that I wanted to explode their letterboxes with burning poo.
    Now I feel they have a place pulling from one side as a counter to the crazy people at the other end who would risk their childs health and happiness for a ‘cure’.

    I do get what they are saying..kinda. But I would (and do) say to them that while I certainly accept my son the way he is, I also want to give him capabilites he doesn’t have. For him. Thats a ‘cure’ to my mind.

    And I’m sick of the ‘my autism is who I am’ thing. BS. Well..more correctly to my mind ‘possibly BS’ because how can we know? Might there no,t hypothetically be a medicine one day that an Autistic person takes, that doesn’t change who they are (surely not possible?) but makes them more capable in the way ADHD medicine allows those people to function better. Who wouldn’t want to be more capable?!

    • I think we’re of much the same mind nostromo.

      Your comment also nicely brings up the complications added to this discussion by different uses and intents behind the word “acceptance” and “cure”. I so often end up using “..” in my posts since so many words in the autism debates are themselves in debate!

  3. Bill says:

    I am endowed with Asperger’s. (A heritable condition in my family)

    I find your post well reasoned.

    Something from this week’s news which adds emphasis to some of your points; scientists have found that the gene expression in many autistic brains differ from that of neurotypicals- “In fetal development, different mixes of genes turn on in different parts of the brain to create distinct tissues that perform specialized functions. The new study suggests that the pattern regulating this gene expression goes awry in the cortex in autism, impairing key brain functions. ……. normal differences in gene expression levels between the frontal and temporal cortex were missing in the modules of autistic brains”.

    This study, if reliable, would suggest it would be very difficult to ever “cure” the most common, heritable or one-off gene defect autisms, because how would you deliver gene “fixes” to just certain cells in just certain parts of the brain? The expression of these genes is programmed in fetal development, long before any interference from vaccines or vaccine preservatives.

    For some of us on the spectrum, if all of our brain cells are the same, you could literally say we have “One track minds”.

    • nostromo says:

      Certainly sounds highly plausible. I would like to understand..one day, the specific mechanism behind the change that my boy went through from about two onwards. He was doing many ‘normal’ things children do prior to that age. I’m pretty certain it too would be a genetic thing, I don’t really believe at this stage in the environmental aspect, the change is too big, and the traits I see in other parents of Auties are also there in us.
      I have also heard of studies that suggest the normal synaptic pruning that occurs in children as a normal and necessary function doesn’t work the same way, and so the neurons end up over-connected and the brain ‘swamped’ (my inference).
      Be nice to know one day.

  4. Aspergirl Maybe says:

    Excellent post. I think you have laid out a number of the issues very clearly here, and I am always in favor of anything that will bring people closer together. My views on autism (as on many things in life) shift and change as I learn more and as I grow in my own thinking as well, but that would be much harder to have happen without dialogue with a variety of viewpoints.

    For example, my best friend was against my decision to allow my son to be prescribed a psychiatric medication, but it has turned out to be a huge benefit to him so far. Her caution has helped me be much more clear about my criteria for deciding whether to continue with it as time goes on.

    • Great example of the benefit of a dialogue open to a variety of viewpoints, thanks for sharing that Aspergirl Maybe (soon to drop the “maybe” perhaps, according to a recent post…? 🙂 )

  5. Sharon says:

    Love this post. I completely agree. Often those who yell the loudest about us not respecting our children becuase we engage therapy are not parents. Dare I say, they cannot empathise with our deep love and commitment to our childrens wellbeing. Every movement has it’s extremists, and I think it’s a shame that the most extreme voices can drown out a message that is fundamentally good.

  6. KDL says:

    I guess I pretty much stay away from the extremes of all sides of this debate – which may be why I never get 9 comments on my posts :-). Neurodiversity is fine in the sense that every individual has value and importance regardless of how their brain or body works. I don’t think it should be an argument for not doing anything to help our children develop to their maximum potential. Even my (apparently) NT twins require some assistance with learning self-care, self-regulation, and appropriate social skills. I would no more neglect my ASD affected daughter in these areas than I would her siblings. It is taking longer, and more direct instruction in her case, but that is no reason to throw up my hands and walk away. Meanwhile the movement that is willing to risk all, including the very life of their child to try anything and everything to find a cure is also scary…but some of their children, at least per what I have read, have much more severe physical/medical/metabolic symptoms than anything we have experienced, so I dare not judge. In the end I think one key that we often overlook is that each (responsible) parent is most likely doing their level best to find the best path for their child…and it may look really different for each parent/child combination. I had to qualify with that responsible word because clearly there are some parents who don’t, for whatever reason, care…the ones who do care would do well to work together, imho, without worrying so dang much about who is right. For all we know each movement may be “right” in certain aspects, or with respect to certain individuals. It is the claim that they are “right” for everyone that is troubling.

    • What a brilliant comment. I read it thrice to really take it all in – lots of good points and well expressed thoughts there.

      (Oh and, re the 9 comments, 3 of those were my replies so it was really 6… or 7 now 😀 )

  7. Rachel says:

    Hi A&O,

    I just ran across your very thoughtful post. I’ve written about this issue as well; if you’re interested in reading about a similar perspective from the other side of the fence, take a look at:

    http://www.journeyswithautism.com/2011/05/18/neurodiversity-grief-and-the-normal-minority/

    Blessings,
    Rachel

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