undiagnosable autism Hello Michelle Swan

undiagnosable autism

I’ve found a problem with taking a respectful approach to parenting my autistic children.

My son is undiagnosable.

I took him to the paediatrician. The Paed said that he thinks my son is autistic but he can’t diagnose him because the way I’ve supported him so far means he is not distressed enough to meet the diagnostic criteria. He says we should wait until he’s been in school a while and see if that changes things enough to make him diagnosable.  That’s right…. my son’s paediatrician says that my autistic way of parenting supports my son too well for him to be traumatised enough for a diagnosis, so we should let school traumatise him and come back later.

Which of course is a bit ridiculous. And, of course, doesn’t mean he can’t be identified as autistic and supported appropriately. But it does mean he can’t be diagnosed, and unfortunately diagnosis is the socially accepted pathway to supports. I’ve been thinking on this a fair bit in the few weeks since that Paed appointment. I was thinking about it before that too, but it’s really been in the front of my mind recently.

There are problems with the current diagnostic process.

A long time ago now I wrote about some of the problems I saw with the way we diagnose autism. I talked about how we classify autistic behaviours as disordered and as deficits. The DSM diagnoses autism as a “disorder” by observing behaviour. It instructs medical practitioners to look for patterns of behaviours that it calls groups of symptoms that exist in a person.

The thing is, when I read those lists of behaviours I notice that they are all behaviours that exist within what would be called the normal human experience. That is, they are all things that people do sometimes. Deficits in social- emotional reciprocity: failure of back and forth communication, abnormalities in eye contact, lack of facial expression. Restricted, repetitive patterns of behaviour: stimming, echolalia, inflexible adherence to routines, reliance on rituals, fixated interests. Hyper- or hypo- reactivity to sensory input.  These are all normal human behaviours. They are things that are noticed more commonly in humans who are upset, distressed or traumatised. So really, what the Paediatrician was saying was simply an acknowledgment of that, and of the flaws in the system.

Karen Lee said,

‘It is my belief that our perceptions of autism are so deeply informed by autistic trauma that to many people a reduction in “symptoms of autism” is simply what happens when you reduce distress in an autistic individual.’

I agree with Karen.  Further, I believe that the diagnostic criteria used to diagnose autism are based on observations of the behaviour of traumatised autistic individuals.

The DSM also says that “symptoms… may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies later in life.” It acknowledges that an autistic person will become diagnosable when they become distressed enough!!

Which brings me to thinking about how we identify autism in the children who are now being raised by autistic parents in a respectful and supportive way. The children who have experienced acceptance of their autistic neurology from birth and who have never been exposed to harmful therapies.

Autistic children raised by accepting parents, often autistic themselves.

There are an increasing number of children like this. Raised by parents in growing autistic communities characterised by large doses of self awareness, understanding of our needs, and desire for authenticity and inclusion. Children like my son, who is known by the friends and family who love him to be sensory sensitive, and to need a lot of time to warm up in social situations, to have clear food preferences, to need lots of support with changes to his preferred routine, to have an eye for detail unlike most children his age. Known to be probably autistic, but who not disabled in their home environment and when surrounded by loved ones who understand and respect their needs. Which apparently makes them undiagnosable.

And it’s not just children who experience this. There is a reason so many autistic people make it to adulthood undiagnosed, then self identify as autistic.  I myself was told by a psychologist I was “too high functioning” to be diagnosed. Yet the autistic community, which has many diagnosed adults in it, identifies me as autistic.

But I want to focus on children just for now, because there are going to be a lot of them starting at schools in the next few years. They will be turning up having been well supported, and with parents who want that to continue. They will be arriving with no diagnosis into a system that is not set up to help children unless they have a diagnosis. We need to acknowledge this fact.

We also need to acknowledge that the same system believes that autism can be treated and its symptoms can be reduced. Their approach to doing that is therapy. Often the evidence that autism has been treated successfully is that challenging behaviours reduce. Sometimes that is a result of trauma causing shut down. This is a danger of behaviour modification therapy.

But for children raised in families that accept them as they are there is another possibility. If you are autistic and have been raised in a way that doesn’t distress or traumatise you, you may appear “less autistic” to others, but that doesn’t make you cured, and it doesn’t make you not autistic. And as a non-traumatised, undiagnosable autistic person you still have needs to be met that are different than non-autistic peoples needs. Particularly as a young child in education settings.

There are questions that need to be asked.

Why should a child who has been well supported enough, and is currently undiagnosable, have to be subject to a traumatising experience in order to make them diagnosable and therefore seen as being worthy of help and support?

Should we not be able to recognise autism in non-traumatised children and meet their needs so that they do not have to become traumatised?

I don’t know of anyone doing work in this area, anyone doing research that will help us identify autism in people who are not traumatised, or anyone who is looking at ways to develop systems to support the undiagnosable in setting that require a medical diagnosis to activate support and the needed funding for it. These are needed resources. Schools already have many undiagnosed neurodivergent students, and will see more and more undiagnosable children.

Our education system needs to adjust. Our pre-occupation with medical diagnosis needs review. Our neurodivergence identification systems need to change. Our views about diversity need to evolve. And quickly!

 

 

7 thoughts on “undiagnosable autism

  1. One of the worst things about the ABA industry is that they discourage the understanding, accepting, approach. I fell for it, for a short while. In the first meetings, they said to me, “we can see you have such a rapport with your child; you’re so good at understanding him and finding new ways to approach things with him.” I felt good, for a moment. Then they said, “…but you know, that isn’t the best way to help him.” He’ll never adapt, grow, learn, etc. I like to think I didn’t change as a result, but I do know I felt conflicted inside after that for a while. A few months. It makes me so angry. Even just for making me feel uncertain of what I knew naturally was right.

    1. I could make my daughters lives difficult by learning/forcing them to adapt their behaviour to society as much as possible. But, I do know that when me and my wife will be gone they will have a lot of trouble. So I want them to be able to enjoy some part of their life as long as I can support that. I want them to be in balance with them selves in the first place. And then they can learn things to cope with society. It is useless to adapt to society when you destroy your inner balance for it. So, behavioural therapy can help, but it is dangerous if it ignores that. And it becomes very dangerous when applying it with the idea of curing autism.

  2. I often think of what is known as the Broader Autistic Phenotype in this manner. They are those, often parents of autistics, who have a lot of autistic traits but “not enough” to disable them or gain them a diagnosis. I consider those people just as autistic as the rest of us.

  3. Good article. It exposes a lot of problems which are important but not seen by most people. Gives material to think.
    For a start, you expose a contradiction in the current definition of autism.
    It is defined as something you are born with or not or that you have from early childhood at least. So, you have it or you don’t. But the way of diagnosing makes it possible that you don’t “have” it at one point in time and that you do “have” it at an other point in time.
    So the way of diagnosing is contradictory with the definition of what is being diagnosed. And that leaves a lot of autistic people undiagnosed. I consider myself also an undiagnosed autistic.
    I guess the reason for that is that the diagnoses process is heavily influenced by the capitalistic society and capitalistic motivations. There is too much motivation in it to avoid cost. In DSM V that became very clear because they added levels to it, levels based on the amount of support needed. Calling those levels, levels of severity is also wrong. There is off course a relation between severity and the amount of support needed, but it’s not the same. The severity of someone’s autism doesn’t change in time, the amount of support needed does.
    I even read somewhere that these levels should not be used to decide on granting support or not. So, I am wondering what their purpose is except for being able to deny someone has autism, not because he doesn’t have it, but just because he can handle the stress (at this point in time).
    I think, a dignostic system like that is a bad thing for acceptance and it makes it very hard to get support when needed for those who do well for a long period of time. They (we) have no acceptance for our autism until we get in a state that makes it very hard to organise us well enough to ask for acceptance and support.
    I don’t need support, but I need to know that it will be possible to get support when I do need it. And even more, I need to know that my daughters can get support when they need it. Even for them, while they have a diagnosis, I can not get that guarantee as long as I can help them enough. And when things go wrong with me, I won’t be able to organise something for them. And that is the result of another problem that’s exposed in the article: a lot people with autism highly depend on their parents which are also people with autism, but a lot of them are high functioning or undiagnosable autistics.
    The system is punishing those who do well, those who do help their children well and those who are helped well by their parents by denying them acceptance and respect.

  4. Thank you! I’m an autistic parent considered “ high functioning” with loads of trauma I required therapy for many years to get over and then my three children ( two autistic and one dyspraxia with many learning disabilities) were homeschooled because they had so many issues at school – 3 years out of school they became well supported and now years later the drs think the original diagnosis ( tho I have papers) were perhaps wrong but get my children into a sensory experience of negativity or in certain situations or perceptions and yes, their brain is quite different from the typical and should be acknowledged as such. In a time of political diversity acknowledgement this area is sadly lacking and people who pride themselves on being well versed in diversity usually have no idea about these issues! And unfortunately because I’m autistic myself I can’t give words to advocate for myself unless I’m writing!!!

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