101 on Autism Diversity, for Autism Awareness Day

Each year, on Autism Awareness Day, I try to go with a slightly different theme. In 2011 I did a piece based around how much I love my son, in 2012 I looked at the difference in awareness campaigns in NZ compared to overseas. This year, I asked myself what is the most common misunderstanding about autism that I encounter and would like to change.

By mattbeckwith, via Flickr

For me, at this time, that is the ignorance around the enormous diversity within autism, especially because that ignorance leads to unhelpful stereotypes and all the damage that stereotypes can cause to a vulnerable population.

First, you need to know that there are five types of autism. When someone tells you they have autism, they might mean PDD-NOS, classic autism, Aspergers, Retts or CDC. These are known as “autism spectrum disorders.” The symptoms required for a diagnosis of each do vary somewhat, but essentially autism affects communication, social behaviour, and is associated with restrictive interests and repetitive behaviours.

Even once you know the types of autism someone has, the severity with which it affects an individual changes not just from person to person, but also over time. There are a number of ways in which we try to capture that diversity, some refer to functioning level for instance, but it is hard to capture the multiple ways in which autism can affect so many different parts of someone’s life: In one area of symptoms the autistic person may appear to do very well, but in another area they immensely struggle on a daily basis.

Even once you know the type of autism, and the severity, there are other aspects of autism that impact on the way the person can operate in the world. For example, autism is very frequently accompanied by OCD, ADHD, sensory issues, seizures, and anxiety. Some people treat these as pure by-products of having autism, some people treat them as separate conditions that co-occur. The point remains the same: Living with autism brings many challenges well beyond those you find listed in a diagnostic manual.

There is another aspect of the diversity within autism that is also frequently over-simplified in the public eye, and that leads to huge misunderstanding about what autistic people need, and can do in life: Their intelligence. Some autistic people have an intellectual disability or clear brain damage, others are extremely intelligent or gifted. Some seem to bridge both worlds by being savants, with very strong and astounding skills in perhaps a singular area of life, but otherwise facing immense challenges in other areas of life. Figuring out how intelligent an autistic person is, is a difficult challenge in itself. Standard intelligence tests measure things other than only intelligence, which skews the meaningfulness of the results. (Like asking someone to take a test in a different language, and concluding they have low intelligence because of their low score.)

One last thing I want to add to this not-exhaustive list of the diversities within autism: Individualism. Autistic people are individuals. They have their own interests, their own personalities, their own life experiences. Though autism can and does shape how they perceive and experience the world, it does not dictate how they will respond to those challenges. For some they become deeply cynical and angry. Others are full of joy and light and hope. Some are rude, some are so polite it sets the standard for everyone else to follow. Some become experts in a field and get professorships, some prefer to play video games all day. They’re people. They’re babies, they’re children, they’re adults, they’re parents, they’re lovers. They’re people.

So next time someone tells you they or their child has autism, please don’t assume they shouldn’t be able to talk, or are savants, or whatever other stereotypes you may have picked up from movies, books or limited interactions. Autism is a real condition, that has various types and various severities, and it doesn’t predetermine who the person is or will become. Autistic people have a lot in common with each other because of their autism, but they also have untold differences because they are individuals. If you’re not sure what to do or say on hearing someone has autism, ask them what it means for them, rather than assuming, and you are bound to hear some amazing tales of how incredibly different an autistic life can be to what you may have imagined.

So that’s my message this World Autism Awareness Day: Autism is beautifully, challengingly, devastatingly diverse. This autism day, consider seeking out and listening to their diversity through their own stories and the stories told by those who love them. They are all so much more than their diagnosis.

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9 Responses to 101 on Autism Diversity, for Autism Awareness Day

  1. Paige says:

    Eloquent as always 🙂

  2. Jessica says:

    Absolutely more than their diagnosis, so perfectly said.

  3. Angel says:

    I hope the world is reading this, very well said.

  4. Terri Jaco says:

    Well said. I may be faced with the choice of an IQ test in the near future for my 7 yr old son, who is largely non-verbal, differently-communicative. I don’t know if I should allow it, ask for it, or what!!! Has your son gotten one? (you don’t have to answer that!) Is there any huge reason why I shouldn’t, other than the results are skewed? Negative consequences that I couldn’t overcome with the advocacy I already do in the school (USA)? Thanks.

    • My son has never had to go through an IQ test, because he’s never done anything that depends on the result. I think that would be my guide as to whether it’s worth having one: Will it allow you to, or is it required for accessing something he otherwise couldn’t take part in. I think the knowledge of the IQ in and of itself won’t be useful on a standard IQ test because of the challenges our kids face with test taking, but if he takes one of the tests that take into account the areas where our kids struggle that don’t necessarily reflect the underlying intelligence, then it might be useful and relevant. I can’t recall the name of the other types of IQ tests, but the are a range of options and I know there have been studies done comparing the results for autistic people on some tests versus others, you might be able to find the info through a google search. Sorry I can’t be more helpful than that off the top of my head, hope it helps anyway 🙂

    • Yadira says:

      my 5 year old daughter just got one. i didn’t even know she was going to get one. the results of the test do not describe my daughter. i do not even see what was the point of the test. if my daughter is not verbally communicating how are they supposed to get an accurate result? i paid it no mind.

  5. Thanks Paige, Jessica and Angel xxx

  6. Matty Angel says:

    This reminds me of a intro to a talk I did to a small group once 🙂

    🙂 I can draw, I can write, I can use a computer… I can play some computer games. I can talk (though sometimes I don’t like to and it depends if I feel comfortable) I can play with my toys, I can cook!!! I can look after my kitty…. and I can tell you about the 1592 to 1598 Japanese invasion of Korea with a focus on the battles at Jinju Fort (The first in 1592 the second in 1593)

    … As I have told you I can do some things… but I can’t do other things. Sometimes what I can’t do doesn’t make sense… and I know that can be confusing… But I am an individual, just as I am Autistic I am also Me. There is no one else like me, so anyone you have ever met who has Autism, they won’t be exactly like me… they may have things in common though and perhaps that can help you… but they won’t be me.

    And that’s why what I will tell you today will be about my experiences and what life is like for me, but never what it is like for people with Autism… but of course… it might be that way for some others with Autism. But the fact is since I am me and they are them… there’s just no way for me to be sure.


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