The “It’s Just a Difference” Delusion

Brain structures implicated in autism I’ve read this so many times now.  And it gets more tired every time.  “Autism is not a disability, it’s just a difference.”  It’s oft-quoted by the more strident and vocal autistic campaigners, who are affronted by the mere hint of autism being seen as disabling, or an encumbrance for the autistic or their parent.  They talk of the gifts of autism, of how it’s only a different way of thinking and cite all the famous people either with it, or who are retrospectively suggested to have been autistic.

So who am I to say different?  I am an autistic adult, parent to two children who are also both autistic.  We are all considered “high-functioning” (that over-quoted misnomer).  Therefore I speak from two perspectives, as an autistic adult dealing with the difficulties autism has given me, surviving in a world that doesn’t understand me and as a parent of two children with immense difficulties and for whom I have to battle constantly, to get their needs met.

I am all for singing the positives of autism.  We do have them and some have splinter skills or special talents (my family included!).  I also believe in selling the positives to a child old enough to be told of their diagnosis, because childhood is a time when people are finding their place in the world and need to build confidence and self-belief.  This can apply to newly diagnosed adults too, who are re-evaluating their life to date through new eyes.

I’m still struggling to get my head around what “ableism” means.  I thought I knew, but it’s used at the drop of hat, sometimes about such subtle and complex scenarios, to the point I don’t know any more.  It’s the hotcake of the autism community, well at least among those strident campaigners.  All I can tell you is the truth.  I’m not interested in arguing about whether “person with autism” or “autistic” is more appropriate (although I much prefer the latter), I’m more interested in getting understanding of autism and the adjustments we need, out there.  Because all the while they are lacking, the world is way more challenging than it needs to be for autistics.

So I want to ask some questions, of those autistics who insist that autism is not a disability, not a deficit.  How is it not disabling when…

  • …my youngest child cannot understand what peoples’ intentions are, leaving her to constantly assume negative things, leaving her having a meltdown that lasts up to 2 hours?
  • …my eldest child (at the age of 13) has needed to sit on my lap for 4 hours sobbing, after first circling the room endlessly downloading what’s happened, because of the stress of her school day?
  • …I go to a meeting and my brain cannot handle all the voices contributing and it leaves me unable to process what’s going on properly, and afterwards I need days to recover?
  • …my youngest child has aggression and hyperactivity that cannot be curbed and which leaves me at times getting punched and hit with objects?
  • …we all have sensory processing disorder, causing much discomfort and difficulty?
  • …my intelligent eldest child with a superior vocabulary, is excluded by peers and cannot talk about things at their level, leaving her isolated and lonely?
  • …my youngest child has to control everything and everyone around her to an extreme degree and does not respond to any normal parenting technique, leaving her potentially unable to find a successful place in society?
  • …my eldest child has such bad OCD that she repetitively questions me until I think I will go crazy from no let-up and why she wastes hours on her OCD habits daily?
  • …I am overwhelmed instantly by every meltdown or incessant questioning episode from either child?
  • …my children are unable to cope with the “bad stuff” in the school curriculum and are in fact traumatised by it, left with nightmares, intrusive thoughts and panic attacks?
  • …we can’t bear busy, chaotic places, they tire our brains and make us overwhelmed?
  • …my communication is constantly misunderstood and criticised by neurotypicals, causing constant challenges and making things way harder than they should be?
  • …I suffer ‘Aspie burnout‘ with such ridiculous regularity, that I feel obliged to refer people to Christine Miserandino’s Spoon Theory on a regular basis?
  • …my children are emotionally and developmentally delayed, meaning they don’t have a full understanding of potential dangers (yet have irrational phobias that affect their lives) and cannot be left alone?
  • …my eldest child cannot handle plans changing and will shriek, cry and wail in an overwhelming way when they do, no matter how many times I have explained why life is like that?
  • …my youngest child hyper-focuses on sources of anxiety and will find everything a negative?
  • …my youngest child has sleep problems and cannot sleep without melatonin?
  • …why both my children are on medication for anxiety because nothing else has worked?
  • …I feel like an utter alien in the world, my differences are so apparent to me and it seems there is nowhere I fit?
  • …my children have all-consuming phobias that cause them to panic?
  • …my eldest is so offended by her diagnosis that she refuses to accept it?
  • …my eldest was bullied for her differences in school even though nobody knew she was autistic and someone once, outright incredulously asked her if she was autistic?
  • …my eldest was so stressed in high school that she was unable to listen to her body and wet herself several times?
  • …my eldest has been off school for 18 months and counting?
  • …my youngest was unable to integrate into mainstream because it stressed her too much?
  • …my children don’t have any idea or understanding of the impact they have on others?
  • …my children won’t go out with their dad if I don’t go too, because they have separation anxiety?
  • …I was repeatedly passed over for promotion in work and was once sent on a training course in how to interact with people (pre-diagnosis)?
  • …my children come at me with multitudes of worries day and night that they can’t stop thinking about, to pour onto me?
  • …why I’ve had to buy PECS social stories, punch bags for aggressive behaviour and sensory toys for my child?
  • …there have been times when I wanted to take my brain out of my head and leave it on a shelf just to get some peace?
  • …my youngest has major meltdowns and rants in public which show no signs of stopping at 11 years old?
  • …I find it so hard guessing when it’s my turn to speak on the phone and end up butting in accidentally and hate phone calls?
  • …when my youngest has a meltdown which overwhelms me she won’t let me escape to another room, she will follow me, screaming at and hounding me?
  • …why I have had endless battles and tribunals to get statements/EHCP’s, diagnoses, school places, support and more?
  • …why my eldest has no initiative whatsoever and needs to ask me endless daily minutiae to the nth degree?
  • …how even a simple planned or spontaneous outing can end up not happening due to meltdowns and other challenging or exhausting behaviour?
  • …you can get a diagnosis of autism or Asperger’s syndrome, which by the nature of the diagnostic criteria, describes deficits and impairments?

I could have made that list so much longer, but I think you get my drift.  As a parent of autistic children, I can honestly say that I frequently go through hell with them.  It is interspersed with the odd moment of humour and there is a whopping amount of love, but the negatives far outweigh the positives and that’s the simple truth.  Not only seeing their difficulties and wanting so much to make things OK for them and feeling irrationally guilty for giving them autism (I had no idea I was autistic when I started a family), but also the awful, health-destroying, relentlessly challenging behaviour I have to deal with day-in, day-out. The sort of behaviour that is unimaginable to some and makes me wonder how I am still standing.

And don’t forget, being autistic myself, I try to see off as many problems as I can, I know in a general sense what things to avoid or will help, but still there is so much you cannot account for, so many difficulties that will still happen and so much behaviour over which you have no control.

I worry about my children.  They have difficulties I don’t remember having as a child.  They seem to be more autistic than me, I see traits that I desperately hope will ameliorate as they grow, I fear for what will happen if they don’t.  And I fear for what might happen when I am no longer here for them.  Who will care?  I have spent their lives anticipating and catering to their needs, nobody else will have that depth of care for them.  So many of their difficulties will not be understood and will be brushed off by others, even those designed to help.

I saw that today, as I have seen so many other times.  In meeting a professional specifically intended to advocate for children.  She didn’t get it and I could see that she would never fathom what she was doing wrong.  So please, don’t tell me it’s not a disability, that it’s only a difference.  I don’t want to be the same as everyone else, because from my autistic eye-view, I don’t like the way a lot of people are anyway.  But there are so many ways in which we are so disabled and it’s definitely not all down to the social model of disability, it’s down to our brains and our internal experience.  The world is never going to be able to change into everything we want or need, because there is too much of what we endure, that is nothing to do with the world.

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32 thoughts on “The “It’s Just a Difference” Delusion

  1. Very honest post. I’ve worked with autism for many years now, and your story is so true. “Just a difference”, by no means gives it justice. Thank you for sharing. Good blog.

      1. I loved ‘Neurotribes’ and do think neurodiversity should be treasured and celebrated, but for me that can live alongside autism as a disability which can severely limit a life in all sorts of ways. No amount of adustments and ‘autism friendly’ initiatives can ameliorate this.

  2. Neurodiversity must be accepted. But it’s the “autism is a gift” camp that are denying the disabling nature of it who are glossing over the truth that I disagree with. There also appear moves afoot among official circles to jump on the bandwagon of it being only a difference too, because it suits their agenda not to diagnose and provide resources which cost them. Very convenient. Autism is the most expensive condition to support.

  3. Good blog. I found so much with which to identify in your comments about your own experience of NT society.
    However, being a recently-diagnosed, 63 year old, early-retired corporate attorney and Aspie who probably also suffers from ODD, I cannot resist a couple of suggestions for improvement. This is meant as constructive criticism, to make something good, better.

    1. It drove me nuts trying to figure out which daughter was which until I realized you meant “elder” and “younger” daughter, as there are only two. Please change “eldest” and “youngest,” which only apply when there are three or more, to “elder” and “younger.”

    2. Perhaps it would be better to focus on the “just” in “just a difference” rather than the “difference.” IMO it is the belittling of the effects of the difference that is the problem, not the refusal to call it a disability.
    Personally, I fear being perceived as sub-human when people talk about “disabilities.” Why can’t we talk in terms of a “difference that challenges participation in mainstream society?” I mean, similar to the way that desert plants and rain-forest plants have “differences” that cause them to be unsuccessful when placed in the other’s environment, autistics have differences that hinder flourishing in NT society, but would cause them to flourish under conditions where NTs would wilt.
    FREX, Aspies are better suited than NTs to jobs that most efficiently are performed solo (e.g., overseeing automated processes, night watchman, night nurse, astronomer), or that require strict adherence to protocols (e.g., nuclear facility engineer). (for some other job suggestions, please see http://learnfromautistics.com/leveraging-spectric-honesty-candor-get-hired/ ).

    3. IMO you would make your bullet points easier to follow by organizing them into categories. FREX, organizing either by (i) individual, or (ii) nature of autistic challenge (e.g., Theory of Mind, sensory overload, NT ignorance). Then you’d be able to collapse some of the very similar bullet points, leaving room for some you left out.

    4. Call for specific solutions. Do you have any concrete suggestions about how to “fix” (or ameliorate) any of your bulleted problems. Do any of your readers have suggestions? (Please see my job-related suggestions at http://the-art-of-autism.com/workplace-tips-for-aspies/

    1. Thanks for your comment – very Aspie-style and straight to the point! I believe in someone’s personal blog being a reflection of their own experience and way of expressing themselves, and I never use the terms elder or younger (they sound rather like terms one would apply to historical figures!).

      I personally dislike the term difference applied to autism (although I don’t take issue with it being used to describe a different way of thinking because that much is true), because as the list points out, it isn’t a difference it is disabling in many ways. So the emphasis is not on the ‘just’.

      I don’t fear the ‘sub-human’ interpretation you describe. I believe in some ways autistics are superior, despite the disabling features, so I don’t believe that applies and anyone who does think disability is sub-human, is the person with the issue, not that it actually is an issue.

      The bullet-points are not intended to be in any particular order, although I do understand why your systemising Aspie brain would prefer them to flow logically. There is nothing logical about disability. Parenting autistic children is a chaotic, stressful and exhausting experience and the list should reflect that.

      The post is not about looking for solutions, it’s about dispelling a myth, revealing the lie. Solutions do come under the social model of disability, ways of making the world an easier and more suitable place for autistics. And this blog post is specifically about the disabling features of autism that are not to do with the social model of disability as a whole, but about the innate difficulties of being autistic.

      PS If you think you have ODD, you almost definitely have PDA, check this out: http://www.pdasociety.org.uk/what-is-PDA

  4. It is both a difference and a disability for a diagnosis. Autism in all shades is definitely brain wiring differences. However, to get a diagnosis, the differences have to make adjusting to daily living very difficult, usually requiring some assistance of others for support. For some, who have greater abilities, the differences make life hard but they can still function adequately on their own, often going without a diagnosis. The greater the differences the more of a disability. Yes, for some it is a disability because the differences make living in a neurotypical world too difficult without support from others. For those, living in a culture whose wiring is different than yours makes your differences a disability.

    1. Thanks for your comment Bill. I tend to think that even for the most independent autistic, it is still a disability because it is a social communication disorder. Those individuals will likely have problems in their job if it involves team work and interaction with colleagues. It could cause them to misunderstand instructions from their boss. It can lead to workplace bullying and ostracising from colleagues’ social events. That person may have multiple difficulties even if living alone, in coordinating their housework, paying their bills and numerous other things. I believe everyone with autism warrants a diagnosis (that is of course different from saying that they must get one if they don’t want to!). There is a lot to be said for having an understanding and confirmation of your neurology. Self-diagnosis is not any form of diagnosis, it is just a suspicion (however fervently held) that you have it. You wouldn’t say someone with diabetes shouldn’t be diagnosed purely because they are managing their condition with tablets and/or diet and didn’t need daily injections. There are various levels of disability, but a condition with it’s roots in the brain that stops people having full social understanding and makes conscious cognitive effort necessary to get by, is most definitely a disability.

      1. I’ll elaborate.

        There’s basically three major models of disability – your opinions on them are your own, of course.

        There’s the medical model which is the traditional way of viewing disability.

        There’s the social model which makes a distinction between an impairment and a disability – under this model, impairments don’t become disabilities until society refuses to meet needs.

        So, for example, people with less than 20/20 vision but good enough to be corrected with lenses have impairments but not disabilities because society makes reasonable accommodations available with little fuss – specs in the case of a short-sighted person.

        Impairments [what the medical model calls disabilities] are individual, disabilities are society-wide in this case.

        So let’s say that my tendency to uninflected tone has issues on my life – am I bothered or is it society is bothered by my flat tone?

        If I’m bothered, then it’s an impairment and I should look into speech therapy or something.

        If it’s society…well, let’s change society!

        A lot of social model stuff has this as its basic goal:

        “Let’s accommodate everything with as little fuss as we manage for accommodating short-sightedness and the like.”

        How practical it is is another matter but that isn’t an unreasonable goal, imo.

        Poverty may make an impairment into a disability in that case – if you can’t afford specs for example then your shortsightedness would have more impact than someone who just needs to buy their specs. So by that model, a rich person who needs and can afford specs has an impairment, a poor person who needs spec but can’t afford them has a disability.

        The third model is … let’s call it DID. For difference –> impairment–>disability. A lot of neurodiversity stuff is taking this model for granted.

        Difference: Eye contact should be just a difference.
        Impairment: See Social Model.
        Disability: See Social Model.

        So sometimes what some of the “Neurodiversity-Lite” are doing are assuming that you have this background and sometimes…there’s stuff like….

        “Look, there is no need for this particular difference or that particular difference to be an impairment, let alone a disability.”

        So…if you woke up tomorrow and society no longer cared about eye contact…people would notice because people do. But that would no longer be an impairment or a disability. Your son would still have impairments from what you describe…maybe disability too. But that would depend on what else we do.

        Think of it like complications, maybe?

        From social model, a disability is a consequence of society’s failure to accommodate impairments.

        DID model takes that one step further and says the impairment itself is a complication of the difference not being respected.

        There are some neurodiversity things that consider it a disability and a difference, in much the same way there are Deaf people as opposed to deaf people.

  5. Thanks for enlarging upon what you meant. There are of course some things that with reasonable adjustments become much less disabling, there are many that don’t however. We are in a modern age, if you stripped away modern trappings and put us into a primitive state, anything that ‘nature’ (for want of a better term) didn’t purposely design as the ‘normal’ would be disabling (unless it conferred an unexpected advantage), because it would put obstacles in the way of the individual performing their basic needs (e.g. if you have sensory difficulties and can’t bear the roar of a dinosaur/other source of food you are going to struggle hunting it, or if you have motor skills difficulties and can’t throw a spear straight or have low danger awareness and get eaten as a few basic examples). Anything that makes the individual struggle compared to how the norm would function, can be classed as a disability and is, in the UK according to the Equality Act 2010. Individuals can choose to see themselves in any light they prefer (this isn’t about demotivating people) and of course some are far less disabled than others (although that can be put to the test when you consider that invisible disability can be no less disabling than obviously visible, it’s just in different ways), but I’m kind of approaching this from the facts perspective, rather than analysing different ways of looking at it based on how those disabling features can be ameliorated.

  6. http://www.autisminvestigated.com/crooked-hillary-autism-stats/

    “Ne’eman’s group was among the organizations that advised Crooked Hillary’s campaign on autism policy. His group subscribes to “neurodiversity” – an emerging movement seeking to normalize autism while generally diverting blame towards society for autism’s problems. Key among such beliefs is that autism’s huge rise as a result of vaccination is not real and that autism was simply ignored in the past, a position happily legitimized by Crooked Hillary and her crooked, vaccine injury-denying campaign.”

  7. Thanks for your link dragonriko.

    “Autism is a big spectrum and people range in abilities and functioning. Some are able to work, manage their own home but struggle with even the simplest of relationships.”

    The bottom line, is that if someone is diagnosed autistic, they meet the diagnostic criteria, which require the person to have difficulties and deficits that impair their daily functioning. You don’t get a diagnosis if you are not impaired. The dictionary definition of impaired:

    impaired
    ɪmˈpɛːd/
    adjective
    adjective: impaired

    1. weakened or damaged.
    “an impaired banking system”
    North American
    affected by alcohol or drugs to the extent of losing control over one’s faculties or behaviour.
    “impaired driving charges”

    2. having a disability of a specified kind.
    “sight-impaired children”

    1. Some of what is seen as impairments is usually what NT’s class as impairments because it’s not the way they would do things, which is why some think their kids are ‘cured’ when they’ve learnt coping strategies to mask their differences when amongst NT’s. We should accept that people who communicate differently are not necessarily impaired or disabled if they can function doing things their way, in that regard the only impairment is societies inability to accept anything different from the norm. However there are many limitations that Autistic people have which can be classed as impairments or disabilities because they hinder the daily functionality of the person. This should be seen from the autistic’s viewpoint though rather than from societies. If the Autistic sees their functioning as disabled then that is a disability, just like being deaf is only seen as a disability to outsiders, many deaf people are quite happy not hearing and don’t see their inability to hear as a disability but rather societies inability to accommodate them as the disability. To persist in saying they are disabled would be a bit like saying you’re disabled if you don’t speak English. That might be seen as a disability in an English speaking country but in Japan that wouldn’t. Without accommodations and acceptance anything difference could be classed as a disability, but if we were to accommodate and accept then the only disabilities are those that are a hindrance to the individual even without accommodations/acceptance. Unfortunately there’s not much available to help autistics so they struggle more than they should, especially socially, so for most autism is a disability. Hopefully we can make it so not every aspect of autism is disabling, especially the ones which just require some help from society.For some autism will always be a disability because there are some aspects which will always impact their ability to function no matter how many accommodations they are given.

  8. “We should accept that people who communicate differently are not necessarily impaired or disabled if they can function doing things their way”

    But autism isn’t just about communication, it’s about experiencing and functioning differently too and in ways which are impairing.

    “This should be seen from the autistic’s viewpoint though rather than from societies.”

    I agree to a degree, but how society is set up is for the majority and that isn’t going to change, if the best we can hope for is some reasonable adjustments (getting which is currently like getting blood out of a stone) and the majority is “the norm”, so anything that takes someone outside that norm and makes it difficult for them to function as is the norm, becomes disabling. And as the point made in the post is much less about society norms than the experience of being autistic, even that takes a background seat.

    “To persist in saying they are disabled would be a bit like saying you’re disabled if you don’t speak English.”

    That’s too simplistic and brings it back to the above point about it not only being a disorder of communication. A foreign person can use sign language, pictures, mimes, pointing at objects etc. to be understood but their experience of all other aspects is pretty much like everyone else’s.

    Having PDA, your social communication is (going by the criteria) likely to be less impaired than a typical autistic’s, so you have that viewpoint. My youngest is a crossover of HFA/PDA. She has the full whammy of PDA but also the poorer social understanding of a typical autistic. So she has extremely challenging behaviour, which is triggered not just by the anxiety of demands and sensory issues, but also the most ridiculous little things that she has misunderstood, constantly. You for instance might be content with your social experiences (hypothetically) whereas she is frightened and confused by them. But also you could (hypothetically) have had “luck” in your environment which has not yet pushed you beyond your coping abilities (the DSM has a description somewhere about this, something about behaviour not becoming manifest until demands exceed capacity) and therefore not had reason to feel impaired by your communication, yet. Like I always say, put an autistic into an inconducive environment and watch them unravel. That could be the most high-functioning academic too. If someone is autistic, they are impaired and that means disabled in the true meaning of the word. Which refers me back to my reply to educationcomboplatter above.

    1. I guess I’m optimistic in believing that society can change, I do think society has come a long way in accepting disabilities, we’re not shoved straight into institutions at the first sign of any issue anyway, but it would be silly of me to expect everyone to accept autistics as they are. I guess we’ll agree to disagree in some points, no two people will ever have the same opinion on something anyway. It’s funny you mention communication, that’s one of the areas which is most disabling for me. I also have auditory processing disorder so I struggle hearing what people are saying. I constantly misunderstand people’s intentions and will often become selectively mute in some social situations or when stressed. I have a lot of trouble communicating and it can take me weeks to communicate a simple need. Verbally I’m kind of useless haha although I can seem able on the surface because I can script some social niceties, but if anyone were to ask me a personal question I would likely be unable to respond. When I’m on my own there are no issues but when I’m in a group of people then I truly become disabled. I didn’t luck out environmentally as growing up I suffered through many traumas, mostly at home. I should actually have more mental health problems but I seem to have some how come out intact, I think in some way being autistic helped me rather than hindered as it allowed me to distance myself from the abuse. I still struggle to see how non-autistics could see the world differently from how I do, surely even with all the differences a rock would still be perceived the same by us both? It’s a difficult thing to imagine that someone might not see a rock the same way I see one. If only I could look through their ‘eyes’ for a day, then maybe I could understand.

  9. “I also have auditory processing disorder so I struggle hearing what people are saying. I constantly misunderstand people’s intentions and will often become selectively mute in some social situations or when stressed. I have a lot of trouble communicating and it can take me weeks to communicate a simple need. Verbally I’m kind of useless haha although I can seem able on the surface because I can script some social niceties, but if anyone were to ask me a personal question I would likely be unable to respond.”

    That’s very similar to me (and many other autistics!). I have a sensory processing disorder, not been tested separately for auditory processing disorder but I have exceptionally low ULL testing so I’m in no doubt I have that too.

    1. What’s ULL testing? I don’t have many sensory issues, I am hyposensitive to light so need rooms to be as bright as possible. My middle child has SPD I’m sure, he hates having anything on his hands and won’t tolerate certain food textures. I think all my kids are autistic, eldest (9) def PDA, middle child (3) PDA and ADHD, youngest (nearly 1) stimms all the times, rocks and hand flaps. It’s a bugger trying to feed him because he won’t stop rocking long enough for me to put the food in his mouth haha and he does love his food, will eat anything. I’m interested in seeing whether he’ll be PDA too or just autistic.

  10. Ableism is, simply put, just another form of discrimination. People have too much of their own issues to deal with, that they can’t bother to try to understand the nuances of everything all at once, so they generalize everything to try and cope with it all. As bad as it is, it’s a part of human nature. One that will prove hard to change, I think.

  11. I am so glad I stumbled across this post. I read an article which made me feel so guilty for sharing my thoughts on how my daughter facing anxiety challenges and whatever else. I’ve found that writing about our every day struggles helps, now I’m paranoid I’ve made a mistake. It’s really good to read about someone who’s fighting for their kids every day and isn’t finding it easy (but it still doing it with love). I started researching autism and was immediately met with… Don’t feel sorry for yourself, don’t talk about it etc. Ugh I’m getting pretty lost right now. I just want the best for my family.
    Thank you for sharing.
    /selkie

    1. Thanks for your comment selkiesealgirl. There definitely is a big move to pressure society into seeing autism as a unique way of thinking rather than in any way disabling. I know there are autistics who resent autism parents going online and ‘moaning’, but so long as they don’t identify their child and breach their confidentiality, I believe that is their right and sometimes it’s the only way they can get any support. They aren’t blaming the children, they are just expressing how hard it is dealing with it. And if autism was just a difference, why would autism parents have been researched to have stress levels equivalent to combat soldiers! Why would autistics have way higher suicide rates than the average population? Hang on in there and find people (in forums if necessary) that you can compare experiences with, it will help.

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