Saturday, September 17, 2011

Why Autism Awareness is broken

After reading this post on "Autism Today" by Lost and Tired, I felt obligated to share this with my readers. I am certainly guilty of "sugar-coating" how things were with Nathan before and around the time he was diagnosed and that really doesn't help anyone understand what us parents go through!


Problem’s with Autism Awareness

I have been wanting to write this for a while but honestly it seemed to exhausting to do. This has been eating away at me and I need to just get this off my chest and move on. I’m not sure how this will turn out but I want to make a few things very clear as to avoid any misinterpretation. Everyone’s problems are relative and I get that.

I am by NO MEANS trying to belittle anyones personal experience with Autism and its impact in their lives. Now with that said, there are some things I need to say.

Autism and my family

I’m the father of 3 Autistic boys. My boys are each in different places on the spectrum (ranging from low functioning to high functioning) so I have very unique experience and perspective that most don’t have.

Gavin and Elliott are our Aspergers kids. Gavin is “functioning” but not “high functioning”. He also has a host of other mental health issues, most notably schizoeffective disorder. Elliott is our middle child and is “very high functioning”. Most people unfamiliar with what Aspergers actually is, would not know that Elliott has any problems but he does. His issues mostly revolve around anxiety. Gavin will most likely never be able to function independently without supervision. Elliott should be quiet successful in life, as he is more enhanced by Autism then hampered.

Emmett is our youngest and he is Autistic. He is “low functioning” and significantly developmentally delayed. He is pre-verbal meaning he does have a few words but little to no language skills. He was believed to be non-verbal but has picked up a few words so pre-verbal is more accurate. He is violent and aggressive but sweet and beautiful. Emmett is EASILY the MOST DIFFICULT challenge I have ever faced….

My wife and I have been walking this journey for 10 years together so far. I have become an expert (as much as possible) on my children’s disorders….and yes they are disorders. So I do have some knowledge and experience in this area.

Autism Awareness in it’s current form

There has been a lot of debate over whether or not Autism Awareness is effective. I would argue that currently it’s not effective but not for the reasons people think. Many people will say that society just doesn’t care. While that may be PARTIALLY true I don’t think that’s the problem.. There is a fracture within the Autism community itself.

We have parent’s with Aspergers kids (like myself) saying things like “Autism does not define my child”. Then we have parents of much lower functioning kids (again like myself) that don’t say much at all because we are just to exhausted, beaten down and demoralized.

Now, I’m going to say this knowing full well how it’s going to sound but I think it NEEDS to be discussed.
Raising a child with Aspergers (again which I’m personally doing) while not without it’s challenges, it’s even remotely similar to raising a truly non/pre-verbal Autistic child. You have to understand that there is a huge difference.

Again, I can say this as I am personally doing both. I have NO experience in raising a truly non-verbal Autistic child and I can’t even imagine how difficult that is.

This is the problem in my opinion. All we really ever hear are the “fluff” pieces about Aspergers from parents and large organizations. Honestly, they aren’t wrong because many of these kids will grow up to be successful or at least independent and God bless them for that. However, the problem is these examples become the public image for Autism and these parents its voice. It just doesn’t portray Autism in an accurate light and it sends the a less then accurate message.

Truly low functioning Autistic kids and their parents don’t share the same positive experiences or hope for the future. From personal experience I can tell you how demoralizing it is for me to hear people say things like “Autism doesn’t define who my child is” or something similar. The truth is, that maybe for them it doesn’t but walk a mile in my shoes (or anyone else who’s dealing with low functioning Autism) and you’ll likely walk away singing a different tune.

I mean no disrespect by this at all. I just see things from both sides. For my part, I assumed that the experience I gained raising Gavin and Elliott would prepare me for Emmett but I couldn’t have been more wrong… I could not believe how infinitely more difficult it was with Emmett and that’s after 9 years of raising Gavin, who breaks the mold in just about all areas. Honestly, it’s a night and day difference.

How can we expect Autism Awareness?

How can we as members of the Autism community ever expect the world to understand when we can’t even be on the same page ourselves. We preach to the world that every Autistic child is different and that’s very true. However, these words become empty if we fail to apply them within our own Autism community. As parents we make the mistake of generalizing things much the same way our kids do.

We generalize our experience with Autism and its impact on the family and transpose that across the board. In other words, we assume that other peoples experience mirrors that of our own. That’s a very dangerous and damaging assumption……. If we are making that mistake how can we expect the rest of the world to be any different?

The follow up to Why Autism Awareness is broken can be found here: How we can fix Autism Awareness

- Lost and Tired


  1. what a wise and moving post . Thankyou so much for raising this issue . I too find it distressing to see the divisions in the autism community and agree we need to put our belief in each childs individuality into understanding each other. I am not a parent, just a teacher who has taught and loved pupils on both ends of the spectrum and many stages in the middle! God bless you and your wife ,and I pray for your continued growth in wisdom and your obviously great and loving parenting

  2. I am also raising both a child with Aspbergers and a child with modertly functioning Autism.One will probably be ok in the long run to be on his own and be mostly successful.The other, Sam, will never be on his own unless some sort of miracle occurs. Sammy is super sweet and highly volatile also hyper verbal and talks almost constantly often now making sense or being truthful. It is very different raising the two of them. feel free to hop over to our blog and check us out at
    It was great reading your blog tonight

  3. Very well written and understood. My son is now verbal and I do know how hard it was when he was non verbal and I also have a son with Aspergers. Big difference. It is hard to convey that sometimes.