Thursday, May 20, 2010

L.A.D. (Life After Diagnosis)

My diagnosis of Asperger’s syndrome came at the age of 20. I had lived all those years knowing, or at least assuming, something was a little different in me, but I never knew why. Beginning in pre-school, my dad was always told that, "Aaron doesn't socialize too well with the other kids, but that's just because he's smarter than the other kids."

The teachers told me that as well so I never thought anything about why I didn't have friends in the truest of sense. "If I am smarter, why would I want them as friends?" is what my school aged mind thought.

As years went on I began to wonder why I was different. My social issues, and life long struggle with time (eight hours in school was too much for my mind) led me to be home schooled and I wound up not going to high school. I often wonder how big of a train wreck high school and I would have been, or would I have found my place? That question will never be answered.

With each year I became a bit more withdrawn. I had a girl friend (yesterday marked six years since I last saw her) but the relationship was getting frayed. I wanted a connection with other people, but knew I didn't have any. I was very confused because I heard people talk about that bond with others, but I had never experienced it and I knew that it wasn't just because I was smarter. If anything, I was feeling as if I had no intelligence because the only thing I wanted, the only thing was to feel that “something” that I saw other people feeling.

Slowly I drifted further from the world around me, and a line of events happened that alerted my dad to the possibility of Asperger’s syndrome. At the time I was immune to the name of autism because I was so withdrawn. On a cloudy, cold, and windy December day I was assessed.

Going into the assessment I wrote a long document that was essentially my life story in ten pages. I was hoping to avoid conversation with the assessor, but my efforts were in vain.

After the assessment and evaluation it was clear and I had a diagnosis of being on the autism spectrum. Autism? Spectrum? Being new to the world of the autism spectrum I had no idea what the word spectrum meant, and after I was told I had Asperger’s syndrome I went to the internet to see what, exactly, it was.

There were answers for sure, but I also had fears. All those years of not connecting now had a name. I wasn't 100% at fault, so in a way a burden was lifted from me. I had thought that I was simply unlikable. I had thought that I was either hideously ugly, rude, or mean and didn't know why.

Having the diagnosis though also led to a depression. Reading the prognosis and the difficulties of being on the spectrum made me believe that there was no hope. I got into the trap of thinking that, "Since I've had problems connecting with others, and because I have this label, why should I even try?"

That trap led to 15 months of pure unabated depression and self-loathing. My life after diagnosis was… My life? I didn't have a life. I was merely coasting wondering why this had to happen to me.

Eventually all that hatred manifested itself in my ability to write, and I was reminded of that yesterday when I realized that yesterday was the six year mark of the last time I saw my girl friend. After my diagnosis I tried to feel that bond. In my desperation I wanted to see if she cared about me, so my solution was to break up with her, on Christmas, via text message. In my mind she would simply call me and protest this and all would be fine. I was wrong.

After those 15 months and after I started to write I realized that I am unique, as we ALL are. Just because there are pages on the Internet that stated that I will never form those bonds doesn't mean I can't. I may feel them in a different way, but there is always hope!

The trap I fell into is a common one for parents of young children who are newly diagnosed. I went into a denial of sorts in my 15 months of agony, but for a parent, denial is a dangerous world. If Asperger’s syndrome would have been a diagnosis when I was in school (Asperger’s Syndrome entered the DSM in 1994) and I received therapy there is no telling how much progress I could have made. The earlier a child gets therapy the greater the possibility of them being freed from the chains of isolation. This isn't to say that it is ever too late, but the clock is ticking on making the monumental gains.

What I want everyone to know is that my L.A.D. (see title for this blog) was not a good one. Denial, depression, and self-hatred won't get a person far.

Remember though that my diagnosis was personal and I am not a parent and do not fully understand what it is like to hear that your child is on the spectrum. I can only imagine what it would be like. If I had been diagnosis earlier, I would have wanted my dad to do what he could, and not to panic (I don't like panic that much). Knowing what I know now, the autism spectrum is not the end of the world. The generalizations I read on the Internet shortly after my diagnosis scared me to no end. To think that I would never amount to anything and to never have friends was very painful.

Sure, I may have struggles, but I also have extreme joys. These may or may not be on the same page as the rest of the world, but I just wish it wouldn’t have taken 15 months to realize that my life was not over. Time is valuable and can never be returned, be it the agony of being on the spectrum, or the time of early intervention, time is valuable and the trap I fell into robbed me of it. There is hope, there can be happiness, but for that to happen those impacted by Autism, individuals and families, must get past the symptoms found on the Internet and see and experience the outcomes of treatment. Time is everything. Don't fall into this trap like I did.


  1. Aaron, my husband has Post Traumatic Stress Disorder from his combat in Vietnam. He always told me there was something wrong with him but he didn't really have a way to describe it. He got tested and retested and eventually got a diagnosis of PTSD. He is now rated at 100% disabled (I always wondered what a 30% diagnosis would mean; 30% of the time he would overreact to stress?). When he got the letter telling him that "Yes, you have a problem and are now rated 100% disabled with PTSD." we didn't know whether to cry or cheer. My husband said, "It is one thing to keep telling people there is something wrong. It is entirely another thing to have them agree with me!"

    I am glad to know you made it through the awful stage of grief about a diagnosis.

  2. This is a very powerful blog, Aaron. I agree with Annette when she states "It is one thing to keep telling people there is something wrong. It is entirely another thing to have them agree with me!" It is agonizing to actually read the words on paper telling you that your child is "broke" even though there is relief that there is a name for it. But my comment to you today, stressing the power of this blog, refers to your paragraph that states, "If Asperger’s syndrome would have been a diagnosis when I was in school (Asperger’s Syndrome entered the DSM in 1994) and I received therapy there is no telling how much progress I could have made. The earlier a child gets therapy the greater the possibility of them being freed from the chains of isolation. This isn't to say that it is ever too late."
    My oldest son is 30 years old. He was diagnosed with Asperger's when he was 27. He also never had the benefits of therapies, or ABA, or Communication Integration, or any of the many great help tools available to kids today.

    My youngest son will be just fine. (Rob is also on the spectrum) He has been raised with all of the advantages offered today, but what about all the young adults out there who have grown up with Asperger's but never recieved help? How many of them are out there? How many sit back in silence knowing that they are different but not knowing why? How many are being denied any assistance because insurance does not cover the costs of helping them and Social Security Disability does not recognize Asperger's as a disability for anyone over the age of 21.

    Yes we have made a GREAT accomplishment in Missouri getting our young kiddos the help that they need from insurance companies. I pray every night for all the advocates that worked tirelessly to get that bill passed. But I also pray for all the nameless, faceless young adults who still sit in the dark wondering why their grade school teachers insisted that they were just "bad kids".

  3. In the company you work for, I will highly suggest you talk to someone who knows at least a thing or two about mental health.

    I am fortunate to have a mental health background because it comes with my OT training. To tell the truth, some people can be the state you are in even longer than you... and then there are people like me who recovered pretty fast. That said, there is no prescribed formula on how long a person will need to get over this. What is "normal" for one person maybe is "abnormal" for another person.

    I came to terms with my diagnosis rather quickly because of a few things. First, school was one of them. I knew I need to be in tip top shape to be able to study. Second, I was very aware of my usual self, where I know I typically don't get depressed for more than a day. For me to be depressed for over a few weeks off and on was not normal for me.

    That said, I wouldn't trade anything in the world for that experience. First, this is an invaluable experience for me so that I can be a better occupational therapist in the long run. Second, had I not have this experience, I would not have experienced the magical moment that shaped my OT career. Finally, I can use the experience to advocate to my OT peers.