This post has been rattling around in my head for a long time. I have been gathering information and processing, analyzing, re-processing, thinking of how to say what I mean. I think I have it then I hesitate and start all over again. Does this sound familiar to you?
When I was young I was bullied and was always trying to fit in. I had a high IQ, people refer to me as scary smart but I was in the LD room for part of the day because I couldn’t make my letters or numbers right. When I was in the regular room I spent most of my time sitting with my desk next to the wall, I wasn’t completely alone, I had two of my best friends lined up right along with me. I couldn’t sit still, I was always yelling out answers, or talking, or helping another kid with their work.
I spent most of my days daydreaming, lost in my own world. I hardly spoke to anyone and was rarely invited to parties. When people did try to talk to me or ask me somewhere I would freeze up. I wrote before (in the bullied post linked above) about how I started using drugs because that was who I fit in with but maybe I was self medicating. I remember always getting along better with adults. I remember a much older cousin bringing home friends from college for a picnic and my mother commenting later the cousin was mad because I monopolized her friends. oops, sorry.
The first time I ever started to feel as though I fit in was in law school. Maybe because they were all smart too. I don’t know but I know that I have worked hard to learn to blend in but it is hard. I am currently in coaching at work for my communication “being rough around the edges”. Whatever.
Since my son has been diagnosed I have read so much about Asperger’s and Autism and of course I started this blog. From day one I was drawn to the autie/aspie adults. They have always accepted me and I have always felt that I fit in. Some have made comments that I have thought wow that is how I feel to. Things I didn’t even realize.
One time Laura was talking about she either says too little or says too much. I told her I usually have the problem of thinking someone is on the same page as me. She pointed out to me that is lack of theory of mind. Oh.
Marie has often told me “There is no way you are NT!”
Part of her opinion was based on how well I understand my son. She is right, I often relate really well to what he says. Although I don’t experience everything that he experiences. For example I do not have as many sensory issues as him or the same sensory issues as him. But do two people ever really experience the same things exactly the same way? Other Auties/aspies have really helped me to understand things or sometimes when they explain things in a more articulate way I realize I understand, and I mean really understand because I realize I do experience the same things. Knowing this helps me even more with him.
I also have posted how I am certain my father was an Aspie. That was easy for me to conclude and my mom has always told me that we are exactly alike. And yes I used to scream at her too. I am not ready to talk about what I did to her but it gives me hope for my son.
I am so thankful for everyone to welcome me as one of them. Most don’t care, diagnosis, no diagnosis, if fit in, you fit in. I have talked to other parents and we have talked about maybe NT is a spectrum and I am more on the autistic side. I decided to take a few online Asperger’s tests and yep they said I am an aspie. It was kind of hard though because when it said “compared to most people” um, well guess they mean NT people. I went through the DSM-IV tr and I have to admit I struggled with the routines and rituals because to me I don’t have them. But then I remembered all of the things I do that people comment on. I could go on for pages about many things people comment on. I am quirky.
I thought about going to get a formal diagnosis but I have decided not to. This is something I really struggled with and maybe some day I will but not right now. This past year, and years prior, we went through a lot (time, money, energy, emotions) to get my son the help and the answers needed. I am not ready to start that process again.
I then thought what would the diagnosis change for me. Then, more to the point, what would not getting the diagnosis change for me. Would I feel like a fraud hanging out with all of my new friends? Would they still like me? Would I still feel comfortable with them? To me Asperger’s isn’t a diagnosis, it is an identity. I am scared they will tell me no, I am not an aspie. And just as with my son if they only look on the surface at certain times they won’t see it. I have been pretending for so long.
DSM5 – because I just have to!
When I look at the DSM5 changes the last criterion is what I get hung up on: “Symptoms together limit and impair everyday functioning”
That sounds pretty subjective. I finished college, I have a job, married, a child and I am verbal. functioning? I have few friends, and struggle to make friends in real life. functioning? I am in “coaching” for communication. functioning? I can’t cook or clean to save my life. functioning? My husband and I are perfect halves to a whole. I don’t think that either of us could completely function on our own without the other. But certainly from the outside people would say that I am functioning.
Most aspie/autie adults struggle and do their best to function. So if you do a good job, congratulations, you lose your identity! And for people like my son who struggle to fit in and can most of the time, again congratulations, you lose your identity and your services.
I hope this isn’t the case. I hope that the diagnostic criteria are used appropriately. But I am concerned enough based on what GRASP has said and that post contains numbers and emails to contact APA. I have also started a petition to keep the diagnostic criteria unchanged. In an ideal world the diagnostic criteria would actually be removed from the DSM and be a neurological diagnosis instead. But we have to operate within the current reality.
I am very worried about my son and other kids losing their diagnosis and losing services along with that diagnosis. I realize that kids should get services regardless of diagnosis just as I received help all those years ago. But now services are hard to come by. If services are scarce and hard to obtain with a diagnosis imagine how hard it will be get without a diagnosis. How would I (or you) tell my child that he does not in fact have asperger’s after working to get him to accept his diagnosis.
As I said I won’t be going for a diagnosis under DSM IV or DSM5. For me I am old, I can be comfortable with who I am without a doctor (Dr. Marie 🙂 is the only one that matters) telling me I have Asperger’s or I don’t. It is too late for me to get any additional services. But I must fight for my son to keep his diagnosis, services, and his identity. And for other kids- Aspie, PDD-NOS, Autistic, they all deserve they help they need. Call it all autistic if you must but don’t make it so narrow! <—- this chart is very scary to me & is why I am fighting it!