The most dangerous mistake in Autism

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One of the reasons I have this blog was to raise Autism Awareness for my own kids. I wanted to help dispel common misconceptions about what Autism is and how it can affect our children and families. What I have realized is that there are lot’s of issues with Autism Awareness and the Autism community itself. I say this not to drum up hate mail (although that’s probably unavoidable) or stir up ill feelings but instead to point out what I believe to be one of the most dangerous mistakes made when it comes to Autism.

The most dangerous mistake in Autism

What is this all too common and dangerous mistake, you ask? The answer is both simple and complex all at the same time.  The most dangerous, Autism related mistake, is generalization. When you generalize Autism, the children diagnosed with it and the families trying to cope, you do them a great disservice. What do I mean by this? Basically, in it’s crudest form, a person that generalizes children with Autism assumes that they are all the same because they share the same diagnosis. Let me give you an example of what I mean.

How the generalization of Autism affects my family

All three of my boys are on the Autism Spectrum.

Gavin is easily the most complex of the three and has Aspergers along with a rather extreme set of behaviors and comorbidities. Gavin is very intelligent but complicated and many times explosive, resulting in self-injurious behavior. Gavin is also significantly emotionally delayed and while chronologically 11 years old he is emotionally stunted at about 2-4 years of age. Gavin is a main focus of this blog as his behaviors are the most extreme and disruptive and therefor the topic of more posts.



Elliott on the other hand, while on the same spectrum and diagnosed with Aspergers as well, is our most “typical” child. Elliott is 5 years old and has very few inherent Autism related challenges. The issues he deals with are mostly a result of the situation he’s living in. Elliott is actually more enhanced by Autism (advanced intelligence and no social problems) then hampered by it….if that makes sense? Elliott is not often referred to in this blog for behavioral reasons as he has very few behavioral problems.

That leaves Emmett. Emmett is diagnosed with PDD-NOS/Autism Spectrum disorder and is the child we struggle the most on a day to day basis. Emmett is extremely intelligent, like his brothers but has severe language and speech delays. We struggle each day with simple communication and understanding his needs as a result of the very limited expressive language he possesses. Emmett is becoming more of a focus as well because of the daily struggles with communication and subsequent aggressive behavior.

While all three of my boys ore on the same Autism Spectrum, they are vastly different. Their symptoms, challenges, likes and dislikes are vastly different as well.

A person that generalizes my kids would read a few posts about Gavin’s or Emmett’s behaviors and assume that because Elliott is on the same spectrum as well that he also has extreme behavioral issues. The truth is, in fact, the very opposite of that assumption. Put more simply, a person that generalizes my kids, lumps them all together based a limited knowledge or a lack of understanding the true nature of what Autism actually is.

This has recently impacted us in a major way on the educational front with Elliott and Emmett both.

Where else does this apply and how does this affect the Autism community

This affects far more then just my family and the people who generalize Autism are not just people outside the Autism Community.  I see this happen within the Autism Community itself every day. Even the special needs parents to these Autistic kids are guilty of this at times. Let me explain what I mean by this before anyone gets upset. I hear from many parents with kids all across the spectrum and also from parents with “typical” kids. The most common misconception that a parent of an Autistic child can make is to assume that their particular experience with Autism mirrors that of everyone else.

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Let me say it like this instead. I see parents that assume, that because their high functioning Aspergers child can be mainstreamed so can Gavin. They make this assumption because both Gavin and their own child are diagnosed with the same disorder and erroneously assume that their behaviors and challenges are the same as well. It gets even messier when you broaden things a bit and look at these kids as being Autistic in general and not taking into account where they fall in the spectrum.

Why is this dangerous?

First of all, it’s never good to just assume anything. We all know the old saying about people who assume. The real danger in generalizing kids on the Autism Spectrum is that by lumping everyone together, assumptions are made about one child’s “challenges”, “limitations” or “potential” based on another child’s “challenges”,  “limitations” or “potential”. This is neither accurate or fair and can impact many things, including a child’s educational opportunities.

What this, in essence does, is contribute to the stereotyping of kids on the Autism Spectrum. This plays out in both directions as well. People will either equate Autism with high functioning Aspergers or they equate Autism with lower functioning, perhaps even, non-verbal Autistic kids. This disallows for individuality and differences between kids on the Autism Spectrum and stands in stark contrast to Autism’s profoundly dynamic nature.

It also the furthers the spread of misconceptions, misunderstanding and confusion in the general public’s eyes as to the true nature of this disorder. Not to mention contributing to the rift that is already present and accounted for within the Autism Community itself, due in part to misunderstanding and resentment that has been building up over time (which is another post all by itself).

What can we do about this?

In my opinion, the solution is simple but at the same time not necessarily easy. I think the best way to counter this problem is by educating not only the public but ourselves as well. We, as members of the Autism community, must understand that due to Autism’s profoundly dynamic nature, it’s impact on each child and subsequently their families is just as profoundly dynamic. It should also stand to reason that symptoms and behaviors associated with the Autism spectrum would vary widely as well.

Basically, just because your experience with Autism is more positive, you shouldn’t assume that mine is as well.

The best way to help people to understand these profoundly dynamic variances associated kids on the Autism spectrum, is to share our personal experience and/or stories. Each and every one of our kids is touched by Autism in a different way and the impact that our families feel is just as different. We must embrace and accept these differences ourselves before we can ever expect the public at large to grasp or even have a better understanding of what Autism really is.

By sharing our stories in an open and honest way, we are helping to pave the way to better understanding and eventually acceptance. God willing, perhaps even a better future for our Autistic kids. By working together, in tandem, we can help to sow the seeds of awareness so that our kids can reap the benefits of a better educated and more understanding world in the future.

A child with Autism is like a snow flake or finger print in the sense that, from a distance they look similar or even the same but upon closer examination they are in fact, quite different. Each unique in their own way with no two being the same.

 

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  • mom says:

    This is something im really looking for theses days as im already tired of everyday struggle with my 7 yr old autistic kid but what makes me more disturbing people around me judging me all the time and comparing my child progress with his autistic intelligwent cousin . I also love him a lot but I want my challenge to be taken bravely and handle it with patience.

  • mariellemillan says:

    Hi All,

    Can I just say that everyone’s posts are so insightful, inspiring and educational. I don’t know anyone with autism so my knowledge on the subject is zero to none. However, I have always wanted to work with kids and young adults who has autism or learning difficulties so I decided to change careerr and applied to be a support worker for young adults and autism. The company I will be working for (if I pass the interview) will be providing full training and will allow me to take an NVQ course while on the job to enable me to hone my skills further and be fully qualified as a support worker. To be honest I am very nervous as I know this job will be challenging so can anyone please give me some guidance and pointers? I have done some homework like watching documentaries about autism and reading up on them and as you all say there is not one category for autism as they are very complex and as you all say each kid with ausim is different. I just want to be able to do my job well and make sure that I am a good support to them (if I get the job)! any guidance will be much appreciated. Thank you very much!

  • ricketzz says:

    The more you read the better you write. I’d also recommend using an English composition textbook until you memorize punctuation rules (like no [space] in front of a [.]). I grew up undiagnosed and learned to love noise. Flashing lights make me drool. I am 63 and will never be “normal”. Your biggest challenge will be keeping your delusions in check.

  • disillusioned says:

    Couldn't agree more, and I wish the two paediatric psychiatrists, that I have dealt with could understand this.  I have also dealt with a few child psychologists that really need to learn this too.  This is part of the reason that I am "disillusioned".  

  • Tammy says:

    I agree. That's one of the reasons that I share my son's story with everyone I meet.
    My recent post Singer Jordan Knight and Talking about Autism

    • Awesome job Tammy. Thank you for sharing your story.

    • autti34 says:

      i have autism an it hard for some to underestand why i can do so many thing .none came easy .but then can still seem really imature for my age im like duh the autism dosnt go away just becuse u become a higher f person .there some areas im not an im still not awer of my behavior an when im haveing a meltdown or in sencoery over load im like not hf at all .it hard when someone say something cuse they dont get it .my friend who an autism teacher say to say i have autism .what your iusse for your behaviore ie being rude lol

  • Rebecca says:

    One thing that truly gets me is when people look at pictures of my daughter and say "she doesn't look autistic". That infuriates me! Generalizations are very bad indeed! Thank you for pointing it out. One thing my husband and I both say is… "So you've meet an autistic child? Good, you've met ONE autistic child." We have to point out there are some similiarites, but there are a majority of differences and every autistic child is different: different strengths, different weaknesses, different taste, different abilities. Thank you again for this post.

  • @thinkspin says:

    My 22-year old son has Asperger's. I think making generalizations in . . . general are a bad idea. We could apply a rule of logic here: All birds have wings. All angels have wings. Therefore, all birds are angels – a ridiculous premise. I think the problem with the educational system is that it's based upon generalities or the round peg in the round hole mentality. My son was a square peg and didn't fit on the pegboard.

    I think your snowflake analgoy says it best.

    Btw, I don't if you are familiar or not with the website, Wrong Planet. It is a forum for parents with Autism Spectrum kids, as well as for the kids.

    Take care,

    Lauren

  • Heather says:

    So true and in the same way that all of us are different – there are no two the same whether Autistic or not. Thanks for your insight :0)

  • crafterdream says:

    well said. thanks for sharing this 🙂

  • Lisa Jo Rudy says:

    Nice piece! Congrats on a sane approach to an often crazy subject.

    Lisa Rudy
    My recent post Why "You Can if You Can" Is Not Inclusive

  • Stormy says:

    There are currently 5 types of "autism". In my eyes, each particular type has a spectrum of its own. Generalizing any child, whether on an autism spectrum or not, is just an all around bad idea. No kid is the same. No experience is the same. I have one with Asperger's. He is 12. WILD RIDE much of the time, with the same types of experiences you have mentioned about your 11 year old. He is mentally draining. I have two daughters not at all on the spectrum, and often times, either one of them is much more of an emotional challenge. The main thing is, each child learns differently than another child. Even between siblings. Our son (who has Asperger's) displayed an amazing ability at 2-3 years of age with hyperlexia. His mind works in an amazing way. While our neurotypical daughter struggles with working memory deficiency. There is no way to compare a child to another. Just that simple. I lvoed your article!

  • @yormond says:

    I couldn't agree more and thank you for writing this.

  • @LaliQuin says:

    Fantastic post! Thank you 🙂

  • I quite agree, Rob! Somewhere in http://unhandicapping.com/navigating-some-tricky-… I say:

    Too many people nod their head at what Autism SPECTRUM Disorder entails, but completely fail to think about what it means. That is, they talk about what defines a spectrum disorder; they’ll talk about how there are a wide range of symptomatic elements and degrees of severity, which leads to a whole lot of people with the same Dx, who won’t seem to have much in common unless you look more closely and have a decent idea what you’re looking for. And yet, at the same time, there are too many diagnosticians who turn from the reality of their potential patients to look at a sort of theoretical cookie-cutter assembly line, waiting to see if the person will come gliding towards them down the belt, in a puzzle-piece shape perfectly identical to the model.

    To be fair, I find some of this same hypocrisy within the Autism community, which only exacerbates the problem. There are autists who are one minute shouting, “It’s a SPECTRUM! You can’t say that some autists don’t count, just because we’re not exactly what you think an autist should be like!” ….and the next minute shouting, “I am like this!” or “I cannot do that….because I am autistic!” — which, when detached from its context, gives the stray person hearing/reading it the impression that what they are claiming for themselves is an Autism-standard. Wording must be careful when educating. It would be more helpful in breaking down the confusing mythology of Autism to say something along the lines of, “My being like this — or having trouble doing that — is a result of the such-and-such I have because of my Autism.” You know what? Let’s exemplify further. Let’s say a given autist has applied for a job in data entry. They’ve been called in for an in-person interview, but that’s a problem for them because they cannot track the verbal conversation in what’s considered an appropriate fashion. If they say, “I am sorry; would it be possible to conduct the interview over real-time type? I have a language processing disorder as a facet of my particular version of Autism, and that makes it very difficult to converse verbally when under pressure of time. If you give me the chance, I’m sure I can prove my competence for the job both through, and with, technology.” – well, then that gives the impression that a request for reasonable accommodation under ADA laws is being made, as well as that, while the effect of difficulty processing verbal conversation is caused by Autism, it is not something which can be taken for granted about all autists. If that same person responded to the interview arrangements with, “I can’t understand you, I’m autistic!” however, it would not convey information helpful to anyone. While this example comes from the adult context, it could easily enough be altered to reflect, say, a child in school being given what would have been an oral exam. I went with the adult example because it is adults who are (usually) in the position to do the most educating, and the most advocating.
    My recent post 365 days a year of autism awareness, and one year of triumph

    • Lost_and_Tired says:

      Well said. I agree and stated in the post about this starts much closer to home then people would think….the Autism community itself.