First a Note on terminology. Throughout this essay I originally used the terms high and low functioning. Many people, including myself, have some issues with this terminology as it seems to denote “good” and “bad”. Upon receiving some good advice I have swapped these to high and low support. For those not familiar with this new terminology then high-support is the old low functioning and low-support is the new high functioning. This removes some of the negative connotations associated with low-functioning. – End note
Autism is a varied condition. The spectrum spans from some of the most disabled humans on the planet to some of the most productive and capable geniuses. The discussion below is how this huge variation leads to very different perceptions on what autism is and what it is like to be involved in autism world. The variations of perception are just as great between autistic people and non-autistic carers, parents and other involved people. There is no monolith of attitude, no consensus and no orthodox way of thinking about this condition.
There are, however, some universals we can take from this discussion. First and foremost, we all need to understand that any discussions of capability, productivity and “support level” are completely separate from discussions about human worth. An autistic genius doing wonderful things with computers in Silicon Valley may well have a high economic worth, but his value as a human being is no more or less than that of the non-verbal autistic person who remains in care their entire lives. Similarly, just because some parts of the spectrum present huge practical difficulties for the carers and families of those involved, this does not in any way diminish the human worth of the autistic people at the centre of those situations. Their severe autism may “cause” these difficulties but their individual worth as a human being remains the same as anyone else.
The second point to make, and it’s a really important one, is that people’s lived experiences count. This means we need to take into account the views of all people involved not just the ones that agree with our own. Often the acceptance of lived experiences (standpoint theory) only extends to those whose experiences tally with our own and this, as we shall see, leads to tribalism.
We need to take in to account the views of all stakeholders. Of course, autistic people themselves are vital stakeholders. In the past their own views have been all too often dismissed but, I have recently seen a backlash against the views of parents and carers from some parts of the autism community. Self-advocacy groups are fantastic and necessary, but if they descend into a kind of elitism where only the views of autistic people are listened to then they are missing out on vital perspectives. Parents and carers are along for this crazy roller coaster ride of autism and their views and experiences matter as well. Similarly, the dedicated professionals, who work to improve the lives of autistic people have valuable information. Dismissing their opinions in a fit of the self-righteous standpoint theory notion that “only autistic voices matter”, is simply foolishness.
So, with those two points in mind, I’d like to examine the internal conflicts that occur within the autism community, why these conflicts occur and what can be done to mitigate this in-fighting.
It’s a big, broad and wide spectrum
The root of all this stems from the fact that autism is so varied. This generates very different experiences for those involved. At one end of the spectrum we have non-verbal, severely disabled people whose autism means they are unable to function in society very well (high-support autism). These kids need constant care for their whole lives. The difficulties facing the parents of these kids are immense. This is not to say parents of higher functioning autistic kids don’t face many difficulties, but, they are of a different type and form. These differences lead to very different perceptions of the nature of autism.
Broadly speaking the perceptions of autism can be split into their own spectrum. At one end of this “attitude spectrum” is the neurodiversity camp. In their view, autism is a natural part of human neurodiversity and it should not even be seen as a disability. Or, rather, the disabling aspects of being different are not the fault of autism but societies itself. It is up to society to make the necessary adaptations to accommodate the neurodiversity amongst us.
Within this model, any talk of curing autism is not only wrong, it is downright immoral. Even if it were possible to turn an autistic brain into a neurotypical one, it would be a sin to do so. Given that it is impossible to do this anyway, any attempts at such a feat are doubly evil and can only result in misery and pain for the autistic person. A good analogy would be with past attempts to ‘cure’ homosexuality. They didn’t work, could not work and ended up psychologically screwing up the poor gay people that they were inflicted upon. We don’t even consider homosexuality as something to cure these days and so, the neurodiversity movement would say, it should be with autism.
In contrast to the neurodiversity movement we have what I will call the “cure camp”. This group maintain that autism is a pathology for which we should attempt to find cures. Most scientifically literate members of this group will acknowledge that cures are currently impossible, but, they will advocate for therapies that help mitigate the “symptoms” of the pathology of autism. Many would also advocate preventative medicine to screen for and prevent autism prenatally.
Obviously these two camps have VERY different perceptions of what autism is. Most people involved with autism, including autistic people themselves, will not be found purely at one end of this spectrum of opinion. But most will, nonetheless, lean heavily towards one camp or the other. I tend to lean quite heavily towards the neurodiversity end of the spectrum when thinking about my son’s autism. But that last phrase “when thinking about my son’s autism” is key. It is the vital nuance that many within the autism community miss and it is the source of most of the problems and internal wars.
Different perspectives different lives
The autism spectrum is so vast that it often barely seems like we are discussing one condition. The experiences of a high-support child and their family would seem completely different to those of a family with a child on the Asperger’s part of the spectrum.
One will be worrying about:
-Changing the nappies of a 15-year-old “kid”
-How do you deal with a complete meltdown involving self-harming behaviour when it’s no long a child but strong teenager or man doing it?
– What happens when the parents die? Will the necessary institutional care be ok and in place?
The other will be worrying about
- The bullying at school
- How the hell will my aspie teenager navigate romantic relationships? It’s hard enough for neurotypical kids?
- The psychological trauma of being different
- Will they be able to hold down a job?
I’ve deliberately presented this list so that one does not seem a worse set of worries than the other. The problems presented by high-support autism are not necessarily worse than those faced by low-support autistics. Indeed, many of the worries are less because those kids will be “in the system of care” for their whole lives. They will go to special schools, then assisted living or residential care when the parents die. These kids won’t need to worry about jobs or relationships or coping with the cruelties of the real world. The aspies will, at some stage, have to cope with wider society and that can be incredibly stressful and psychologically damaging. Those that suffer from depression, anxiety and suicide are very high. The toll of being different in an indifferent world is high.
Similarly, the higher functioning autistic and their families need to worry about crime. The naivety of many aspies makes them vulnerable to predation by the less savoury elements of our society. This results in a much higher crime victimisation rate and, through ignorance rather than malice, a much higher incarceration rate. All these are worries families of apsies have that are not great concerns for those with loved ones on the lower end of the spectrum.
High is not easier, low is not harder
So, I hope, from the above discussion it is clear that no part of the spectrum is necessarily worse off than the other. The types of problems faced are just very different in nature. Broadly speaking the issues faced by the lower function autistics are more intrinsic to the autism and the problems faced by higher functioning autistics are more intrinsic to society. We can solve, or at least greatly reduce, most issues faced by aspies by a change in society and attitudes. With greater understanding, better adaptations to education and the workplace, and most aspies will thrive. I’m not saying that all issues will vanish with these changes nor am I saying that these changes are easy. Fixing the entire education system so it serves the neurodiversity kids better is a massive multi-billion-pound task in and of itself and that’s just one thing that needs to change. So, the scope of these problems is in no way trivial, indeed it might actually be harder than solving the issues faced by lower functioning kids.
These necessary societal changes will, however, have little effect on the families with lower functioning children. Sure, a more understanding public would be nice and helpful but that does not really alleviate the worries about care after the parents are no longer around or solve the logistics of changing an adult who is still in nappies. These are a different class of issues and, as I said, far more to do with the autism itself rather than societies failings.
This dichotomy between these two sets of problems and their potential solutions affects the way those involved view the autism. One lends itself to the neurodiversity mind set the other the cure mindset. If the problem is society then it is society we need to change if, however, the problem is the autism then it is entirely logical to want to change the autism. What should be noted is that BOTH mind sets are focused on helping the autistic person as best they can. The very different life experiences from these two extremes lead to very different logical conclusions but the objective is the same i.e. a better life for all involved and most particularly the autistic person at the centre of it all. It is this common goal that we should focus on.
The two camps outlined in detail above often go to war with each other. The neurodiversity camp, mostly consisting of low-support autistic people and their families, view the cure camp as monsters who want to engage in eugenics to wipe out the autistic race. The curebies tend to view all talk of neurodiversity as the naïve wittering of people who just can’t come to terms with the fact that their children are disabled. Or, even worse, that the lower-support autistics are only “autism light” not proper autism just people along for the sympathy ride. The language from both side really does get this hyperbolic. I’ve seen nastiness from both side and had it directed at me personally.
It does not need to be this way
I don’t think it needs to be this way though. At the end of the day all our objectives as parents, as self-advocates and as carers is the same. Namely a better life for all involved. There is much that needs changing and in-fighting is counterproductive. I think we all need to step back and understand that autism world encompasses vastly different experiences due to the varied nature of the condition. I would also posit that it is so varied that it is pointless to talk about any monolithic one correct approach to autism. We, each of us, need to understand that our experiences may be very different to those engaging with other parts of the spectrum.
But I’m autistic, so I know best
Autistic people clearly have very important information that no one else involved has, namely the “what it is like to be” of autism. No one, except autistic people, have direct access to this information. This lived experience is obviously very useful if we are to achieve our goals. There is, however, a trap involved in this thinking.
Due to the varied nature of autism, coupled with the fact that certain parts of the spectrum cannot self-report on their experiences, there is a danger that we are making assumptions about the lower end of the spectrum. We have already seen that the practical needs and problems faced by the high-support and low-support end of the spectrum are very different. If this is the case, is it not a big assumption that the internal experiences are in any way similar? How does a low-support self-advocate aspie really know that they understand anything much about what it is like to be a high-support, non-verbal autistic child? The shared label of “autism” links some superficially similar behaviours but there is no guarantee that the experiences these individuals feel are similar, they may be entirely different. Furthermore, how would they know anything about the day to day experiences of the parents of such kids?
If the internal experiences are indeed very different then an aspie has no special insight whatsoever into what it is like to be a high-support autistic person. This should be obvious, but I have seen, I am sad to say, many self-advocates make bold claims about their special insights into the lives of their high-support brethren. Often, they will position themselves above the parents and carers of higher-support needing autistic people in the level of knowledge they have on the subject. This is where tensions can occur because the parents or carer will, quite rightly I think, dismiss out of hand much of the advice dispensed. This inevitably leads to cries of “ignoring the voice of autistics” or “ableism”. This is the danger of standpoint theory. If you are going to claim “lived experience” as a special source of knowledge you had better make damned sure you actually have the lived experience in question rather than a completely separate set of experiences!
But I’m parent I know best
The other standpoint theory stance that is taken is by parents and carers. Here we also see similar sins committed. I think that certain elements of the neurodiversity crowd are prone to committing these faux pas most. The experiences of parents of lower-support autistics will naturally lead many to a neurodiversity stance. When contact occurs with parents of higher-support kids who have a very different view of autism (due to different life experiences) judgement can occur. I have seen parents of high-support kids berated by neurodiversity types because they dared to suggest they wanted a cure for their child’s obvious severe disability. Even worse than this though I have seen high-support dismissed as not actually having autism but instead having brain damage of some kind. This is doubly galling as not only is it cruel, but it forgets history. The original autistics were all, in today’s terms, at the severe end of the spectrum. It was only in the 1980’s that the spectrum was conceived and widened to include the higher functioning parts. If anything, it is the aspies that are the intruders.
Of course, this also swings the other way. I have also seen parents of severely autistic kids dismiss the pain and suffering of those on the aspie end of the spectrum. The general view is that aspies don’t have real autism and so don’t understand. On one level this might be true (as explained above) but if this becomes a complete dismissal of the problems faced by low-support autistic people then it is every bit as sinful as the judgement of the neurodiversity crowd outlined previously (low-support does not mean low difficulties).
Taken to the extreme the parents of severely autistic kids may even start to suggest that Asperger’s and other “milder” forms of autism are simply an excuse for shitty parenting. They feel aggrieved that other parents are using autism and seeking a diagnosis to excuse the behaviour of their spoilt brats. Ouch! That kind of attitude is obviously completely wrong and will almost certainly add kerosene to the fires of the neurotribal war.
The root cause
The core problem in all of this is that human beings tend to be somewhat myopic and focus only on the problems they face. The problems faced by others tend to be dismissed, diminished or ignored. This is why standpoint theory has some value. If we do genuinely take the lived experiences of others as being important bits of information, then we will tend to emerge from our myopic bubbles. The root cause of the problems outlined above is that people tend to only want to embrace standpoint theory when it conforms to their own experiences. This is not standpoint theory, it is simply confirmation bias. As autism is so broad, with such diverse experiences, it is perhaps wise to really listen to what others have to say about their experiences without judgement. Even if you are autistic yourself you might not know very much about what it is like to live on another part of this hugely diverse spectrum. Similarly, if you are the parent of a child on one part of the spectrum you may know very little about the experiences of parents of kids on another part.
I guess the general message here is listen and don’t judge.