#Aspieforever (My Son & Me) #OccupyAspergers

#Aspieforever (My Son & Me) #OccupyAspergers


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!


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Comments

  1. I’m nervous about the diagnostic criteria changing too, in my mind it’s like a civil rights issue except instead of marching forward, it’s being pushed backward.

    Your son is fortunate to have you. I don’t know you, or him, I can just tell 🙂

  2. I’ve often wondered if my husband or I were on the spectrum. My son had to come from somewhere. I got a book from the library on Aspergers but I don’t quite fit the criteria, though some things were very familiar. I tend to put myself down for my weaknesses. If I had a cause I may not be so hard on myself. If a diagnosis would help you understand yourself better, I’d say do it. Otherwise, accept yourself for who an what you are and try to go on. Good luck to you. I’ll be reading your posts!

    • It was very hard for me to objectively admit to myself some of the diagnostic criteria. For example for me my rituals and routines have a purpose but people have pointed them out to me and I can’t deviate from them even if I try. It cause me much stress to try and other people comment and I just ignore them.
      And i guess whether or not i really fit criteria I feel that I fit in with the other aspies 🙂 and that makes me happy.

  3. Reading your post reminded me so much of, well, ME! After my son was diagnosed, my father and I went on to be diagnosed. My husband embraces his place on the autism spectrum, but did not feel the need for a formal/professional diagnosis.

    Thank you for tackling the DSM V. Autism is part of my identity and we need our son’s services very much.

    You rock and I am glad I found your blog. 🙂

  4. I see a lot of myself in your post.

    I was diagnosed at the age of 31, two days after my first day of full-time self-employment. I drove myself to the center which was an hour away and had spent a year working on getting an appointment; I made phone call after phone call to make sure I was on the list. I have a Masters degree in creative writing, a Bachelors in psychology and a certificate to teach special education. My ability to function very well in some ways did not cause anyone in the center to question my diagnosis. It only made them tell me about Temple Grandin and how I could be like her and inspire other people with Aspergers, which is what I’m working on making a career out of now.

    I can understand your fear, though. I was so afraid they would tell me I wasn’t an Aspie but my report actually said I most definitely was and reading it really shocked me because some of the things they said were things I wasn’t aware of at all. I personally wanted the diagnosis just to say “I told you so” to some people who insisted I couldn’t possibly have Aspergers because Aspies can’t function as well as I can and that I was just making excuses for my behavior. I went through my whole life without receiving any services, so I didn’t really expect to get help. So far the diagnosis has led to a support group that honestly is not as supportive as I would like because the people in it are not as high-functioning as I am so I can’t seem to get answers to my questions. Most of my issues currently stem from not knowing how to cope with certain aspects of being transgender or non-heterosexual, and the group leader doesn’t know how to handle these questions either. So really I think for me the point of getting the official diagnosis was so that I can speak out as a person with Aspergers rather than as “a self-identified Aspie who is really just an NT who wants badly to be part of the Aspergers community for some weird reason.”

    This is turning into a blog post and you haven’t invited me to guest blog so I will stop here. LOL What I meant to say was, I agree that Aspergers is an identity. I also think that the question of whether your functioning is “impaired” depends on whether you are able to accomplish what you want to accomplish, not on whether you’re able to do what society thinks everyone should do.

    • SJAdvocate
      Thank you so much for stopping by and leaving such a detailed comment. I hope to address everything. 1) If you would like to guest post on this topic of getting a diagnosis as an adult I would love to have you! 2) Very good point that it is about what I want to accomplish 3) I may get evaluated as you are right, I would feel more genuine. 4) I contacted an autistic that is also transgender to see if they would be willing to discuss this with you or at least give information on support that is out there.
      I am guessing like anything else it would be good to know you are not alone even though everyone is of course unique. I hope that you have read Chaz Bono’s books. I have seen him on different talk shows and he seems really down to earth. He is also on twitter and seems to answer people. But I am guessing that being an aspie adds a different twist to how you are processing all of this. So I hope to get you more information on who you could maybe talk to.
      Thanks again for stopping by!!

  5. I could identify. There needs to be different criteria for females with Aspergers, as well. We respond to the world much differently. Thanks for sharing.

Trackbacks

  1. […] of all I need to clarify that I have not been officially diagnosed. You can read more about that here and here if you wish. I do believe that I am an Aspie and I have done my best to blend in. It is […]

  2. […] I know i am not the biggest or the best blogger out there.  I know I am certainly not always amongst the popular opinion.  I can’t always agree and I can’t even always agree to disagree.   In fact sometimes I just can’t let somethings go, even when I know I should let it go?  Of course that may have something to do with my Asperger’s! […]

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