Autism Spectrum

April 2, 2024

Autism Awareness Month Part 2

The Spectrum and "if you've met one autistic, you've met one autistic"

One of the reasons why people don't understand my type of autism is that they have more experience with people who have higher support needs, like Rain Man.

I've had some people ask me why someone like myself, who graduated from college and worked as a teacher, can be diagnosed with the same condition as someone who is nonverbal and will never be able to live independently. This also includes everyone in between.

What people have asked me is whether there are problems with grouping you all together with Autism, and whether it would be better served to ungroup them.

The following is something I wrote in another forum on that question:

disclaimer: my answer is my own opinions and not authoritative for all autistics:

On Autism, grouping those with extremely high support needs with those who are more functional:

Non surprisingly, this is a complicated area that has had a lot of discussion about it with both pluses and minuses for the different ways of approaching this issue

I’m reminded of something former friend used to say about word definitions. Definitions are neither right or wrong but useful or non useful. A diagnosis is more or less a definition so I’m going to frame these thoughts with this in mind.

Let’s start with how grouping them together is useful then I’ll get into the problems;

Useful:

“Higher functioning” and “lower functioning” autism can be grouped together

; they are likely the same in important ways

1) They share all of the same core symptoms

If you look at the DSM criteria https://www.research.chop.edu/car-autism-roadmap/diagnostic-criteria-for-autism-spectrum-disorder-in-the-dsm-5 

We share a lot of what is now considered the core of autistic traits, including:

• Difficulty with communication

• Severe Sensory issues

• Difficulty with forming relationships and friendships

• Repetitive stimming like rocking, fidgeting, or pacing

• Need for routine

• Having unusually strong special interests or hyperfixations

2) From what we can tell, they are caused by the same things

•  Same Genes- My genes make me far more likely to have a child who may be nonverbal autistic, and vice versa

• dopamine deficiency issues in the brain- Both Autism and ADHD suffer from overactive dopamine transporters, that make a deficiency in brain synapses

• Much lower levels of synapse pruning through brain development- A Neurotypical brain starts pruning synapses from the age of 2 until well into adulthood. Typically, around 50% of synapses are pruned, leaving fewer but stronger connections. Recently, they have shown that an ND brain can have around 20% levels of pruning

Some analogies in naming might include:

Cancer, where skin Cancer might look very different from Brain Cancer, but is caused by the same mechanism, but in different parts of the body. Similarly, different stages of Cancer can have different consequences and effects, including treatability and effect on life.

Not useful:

Now, there are some problems with the usefulness of diagnosing in this way, as is mentioned by what Tobias is saying. There are very different levels of consequences and needs for someone who is non-verbal and may never be independent, vs someone like me who is high masking.

How to address this has been discussed for decades.

1) You can have different names for the diagnosis. This was tried for many years with Asperger's syndrome. This was abandoned in favor of calling everything Autism Spectrum Disorder

The name Aspergers also has a troubling history given that Hans Aspergers who was a Nazi created the label as a way to determine which Autistics could be useful to the Nazi’s (higher functioning) and which should be sent to the concentration camps

2) Autism Spectrum Disorder is what it’s currently called to acknowledge that they are, at their core, caused by the same thing with some of the same issues, but exist along a spectrum.

Realizing that there is a massive difference in needs between nonverbal Autistics and high masking Autistics is complicated by the fact that there are many, many different levels in between the two extremes in how much support is needed- kinda like a spectrum. Having different names for diagnosis will also lead to some decisions on where exactly we draw the lines. Of course, lines are also drawn with the next item

3) There are currently ways to differentiate between the different groups with levels. This includes levels 1-3, with this description on the levels: https://theplaceforchildrenwithautism.com/diagnosing-autism 

Now, the differentiation can be helpful and has some problems associated with it as well.

One problem is that many feel that “high functioning” autism, which is a term that is being used less and less, makes the mistake of assuming that we are, in fact, high functioning and have little to no need for support. My high-functioning autism with no support has led to some significant health problems on my part, including the fact that I cannot work a full-time job at this time, as well as several other autistic related issues.

Many who are assumed to be high-functioning are more inclined to believe that acceptance is the actual need, rather than a cure, which is likely true for several reasons. Acceptance would help alleviate many of their problems, including the need to mask.

Now, admittedly, an over-reliance on acceptance can be seen as ignoring those with high support needs who may live in group homes and such.

There is a reason why late, and family members of those with high support needs prefer the term Person with Autism. Late-diagnosed people tend to see Autism as an inseparable part of their identity, while family members of lower support needs prefer to see that their child or brother might be inside somewhere, while autism is keeping them trapped.

4) As far as cures- honestly, I have a hard time imagining how this is possible given that it’s a fundamental wiring of the brain. There is just no way to rewire brains.

Therapy can be helpful with the following caveat-

Too many autistics were given what’s called ABA therapy, where they were essentially taught how to mask and were punished when they didn’t mask. It ended up causing many people more health problems through autistic burnout and the other issues associated with masking. I'm not aware of all forms of ABA therapy, and some have told me that there are humane ways of doing it. 

Medications- it is more conceivable that certain medications might be helpful much like ADHD medications, many Autistics already take medications for very common co-morbid conditions like ADHD, depression, anxiety, sleep disorders etc.

So, back to the original discussion. Yeah, it's a problem that those with high support needs are grouped in with those with lower, and there are also problems with separating them out. Attempts are being made to work with this, but I don't know where they will eventually land.