Friday, December 10, 2010

Diagnosis: Now What?

I feel compelled to write about this because in the past two weeks I have heard the same story multiple times and it is a story that I too experienced. This story is a tricky one to experience, but one does not have to!

Many times when an autism spectrum disorder is diagnosed a doctor will say the diagnosis is Asperger's or PDD-NOS and essentially show the parent(s) the door and say, "good luck" with little or no explanation with what that means (please note I am not bashing doctors as a whole, but many people and families have had this experience. I think the numbers are decreasing thanks to better awareness and education, but it still happens). When I got diagnosed the same thing happened to me and I had to go to the internet to find out what it meant... BIG MISTAKE!

If you go to Google right now and put in autism you will be greeted by a number, a big number, 17,400,000 pages regarding autism! If you are a parent that just got the news you probably are a bit shaken, and a bit scared, and now the world is asking you to navigate through 17.4 million pages.

With 17.4 million it is a safe bet that not all of them are going to offer a realistic view or a medically and scientifically accurate point of view. This is what happened to me as I read, on a website, that people on the spectrum, "can't have jobs, don't have friends, don't have families, and can't be happy." This was the first thing I read about Asperger's Syndrome and it took me six years to come to the belief that what that web site said was wrong.

I believe that the first week after diagnosis is the most important because if one reads the wrong stuff, if one reads what I read and believes it, well, the amount of hope in one's heart is going to be less than if one read a more realistic and positive point of view. If the right information can be given there may be a bigger buy-in to the fact that their child is on the autism spectrum and instead of one parent going into denial perhaps both parents will be willing to learn about the spectrum and be able to make better choices as to where to go from being told, "good luck."

With all that being so I wanted to introduce TouchPoint's Parent's Guide to Autism (click the cover to see it). This guide is a great tool for those that are new to the spectrum because it gives the right information without overloading the parents with information they can't use. I do know that if you are reading this blog you probably are already acquainted with the spectrum, but should you have a co-worker or a friend have a child diagnosed please suggest this 12 page guide as it is, in my opinion, the best introduction to autism a parent can have.

All too often the parents hear that there isn't hope (there's always hope!) and one parent will deny the diagnosis. This isn't productive for the child, or the family, and with the right information this can be avoided.

I wonder where I would be if I had read something more realistic when I was diagnosed. I went through 16 months of the deepest depression possible before I started to rebound after I started to write. I know what it is like to go through the depression after diagnosis and it is something that can be avoided. If it can be avoided then then perhaps the parents will be more open to the right types of intervention.

In the future I do hope if you come across a new person on the spectrum you remember this post and lead them to the Parent's Guide to Autism. Someday I hope no family will be told, "good luck" when facing the autism spectrum. Instead of "good luck," share with them this guide and wish them, "good hope!" because there is hope, but only if the right information is given.


  1. Actually, at the moment the thing that is troubling me the most isn't how me, my parents or my brother and sister are facing autism, but how the "outside world" is facing autism. Lately I've gotten into arguments with people (including friends) and then somewhere in the arguments they state 'Forget it, you won't understand me anyway... Maybe because of your autism.' Now, I understand they're not trying to hurt me. They might even think they're trying to be understanding. But to me this is just insulting. Appearantly I can't 'just disagree' with them. Appearantly they're the ones who are right and I just don't understand because of my autism.
    I get this more and more often lately. Someone even spoke very slowly and loudly while explaining me, which had me responding 'I have trouble remembering long explanations, but I'm not a retard you know.' The worst response I ever had is that I asked someone 'do you even know what autism is?' and he responded with 'that you're not that smart right?' I did realise he wasn't trying to be rude, so I just explained him.
    What I'm trying to say is: What if you and the rest of your family have come to peace with it all and then a lot of people around you act strange? I have tried explaining, but then I simply get 'Never mind.'
    Since you're with Touchpoint, I wondered if you have an answer on this, since this is something I've been troubling with the last few days...

  2. The autism spectrum is, perhaps, on of the trickiest things to explain. All I can say is that we can do the best we can, but if someone doesn't "get it" then there isn't much we can do. The same way I don't understand how normal people operate is the same way normal people see the way people on the spectrum operate.

  3. Great post!
    As you say, the autism spectrum is tricky to explain.
    For me, 35 year old aspie, diagnosed a year ago, this just makes it even more important to distinguish between the 5 different diagnosis on the spectrum. If something is hard to explain, then leave out all the parts that does not apply to your diagnosis!

    When I was diagnosed I research and read quite a bit about asperger's. Then I made a website (one big static page - prints on 8-9 sheets of paper) with a lot of links to other web pages, videos, podcast episodes, movies/dvd's, discussion forum threads, online tests, paper articles etc. For each link I quoted the parts that applied best to me and my situation.
    Unfortunately it is in a mix of English and my first language, so i choose not to link to it here (at least not yet - maybe there will be an English translation later on?).

    I am also thinking of making a public, multi language, web site that would be a kind of database of links and quotes. From there anyone with a diagnosis (Asperger's to begin with) could anonymously create an account, pick the links and quotes that applies best to their specific situation, and perhaps add short personal comments to qoutes. They should also be able to add new links and quotes, and translations of quotes if they want. When they have done that, they will get a personal, public, anonymous URL that they could pass on to relatives, friends, co-students, co-workers etc when they tell them that they have Asperger's (or another diagnosis). The visitor will then see a web page, kind of like mine page now, with highlights of how other people describes the part of AS that applies best to their aspie friend, what kind of problems other aspies are struggling with that their aspie friend might also struggle with.

    What triggered me was two tings:
    One of the first great resources I found on the web was a document (in my first language) that was named something like "A Users Guide to an Aspie for family and friends" (my translation of the title - a users guide like the one you get if you buy a new stereo etc.)
    The other was that by linking and quoting, I felt I didn't have to "expose" so much personal information about myself, how I felt, what I was struggling with. I could "hide" behind the fact that I was just quoting others. I didn't say I was having that big a trouble with [...], I just quoted others that were saying that they had big trouble with [...] due to Asperger's. I just "suggested" that they might consider that I might also feel that way :-)

    What do you think of this idea? Or has anyone already made it?
    Am I thinking to complex? Would people "bother" to set up their personal "profile" like this?

    I work as a software developer, so the technical side of it I have more or less figured out the design of. It is more the time and effort and some visual / user interaction design that's holding me back, and of course; the doubt of how useful this would be to others?

    I am a bit embarrassed to admit this, but I kind of dislike the association of Asperger's and "autism". I feel it is kind of wrong and misleading. I agree and "allow" people to compare and talk about Asperger's and "the autism spectrum", even though I am not a big fan of that way to start explaining what Asperger's is and is not ...

  4. I don't think there is anything like this out there. What I like about this is that it allows the person to give the information that they feel is relevant to them. There is so much mis-information in the world and with each person being so unique it may be a great idea.

  5. I came into the journey with my professional knowledge in hand. While it wasn't much comparing to what it is now, it still maybe perceived as a heck lot than some people start this autism journey with... as I already had some good information going in (from what my issues might be, to what signs I should be looking for if things go bad, to what treatment options may work for me).

    Here is what sets me apart from a lot of individuals with autism is- I go to OT conferences not only to present, but also exchange ideas with other OT autism experts and network. I also get theoretical explanations of why people with autism are the way they are and what they can do to improve on various aspects of their daily lives. Based on what I learned from the experts, I then can break down the information in bits and pieces to people who want to know more about autism and why certain things are happening.

  6. My daughter was having a chat to an older lady about Aspergers, just the other day. She said, "In general, I don't think the way others expect me to think and therefore they don't get me...and I don't get them." Then because the lady was wanting to know more, she mentioned a couple of her traits...which we all had a bit of a laugh about. Like...if you REALLY want to know the truth about how your outfit looks...ask my kid..