Afraid of Diagnosis

[vanillabuzz]

I'm pretty sure this has been asked/talked about before but basically, for about a year now, I've become almost certain that I have Asperger's. For a while now, I've been toying with the idea of getting officially diagnosed. Not because I am looking to change the way I am, but because I feel like an official diagnosis would sort of give me some peace of mind. In the sense that I would know why I am the way I am, I would know I'm not just weird as people usually refer to me as. It would be some kind of validation for who I am. Where I live (Mexico City) there are very few Aperger's specialists, and I was able to finally get their information through an association called Asperger Mexico. I've made an appointment with one of them, a neurologist, and I'm going in on Wednesday. That is far too soon for me, I have to prepare at least a week in advance before I go out. I hate spontaneity and even though this is something I have wanted for a while, I'm anxious at the prospect of going to a specialist for it in only two days.

That aside, there is something that bothers me even more. I'm afraid he will say I don't have Aperger's. I have found so much comfort in knowing that could be what I have that not having it would put me back in square one. What if I'm just weird? I'm really afraid of being diagnosed as NT. I thought I would voice it and ask if anyone has gone through these fears. What is the process of diagnosis like? Can he look at my brain and be like "Nope, just an NT with social issues." Even though my problems go way beyond that. I don't know, I'm just overall scared and I thought I would vent.

 

[BIMOG]

Check the online definitions of Asperger's, with emphasis on the "triad of impairments", then write a list of the symptoms that you display, giving examples of incidences in your life of how these symptoms prevent you from living a "normal" lifestyle. Basically get it straight in your mind exactly what you wish to tell the specialist, so that nerves don't get the better of you on the day and you don't forget to mention something important. Being seen so quickly may be a little frightening but consider that in some parts of the world other people gather dust stuck on waiting lists, sometimes for years, before they get their much desired opportunity to see a specialist. Good luck with your appointment.

 

[vanillabuzz]

You're definitely right on that, I hadn't thought about it that way. Still nervous regarding the diagnosis, but hopefully it will all go well. Thank you!

 

[AsheSkyler]

I hear there is a 40% of getting misdiagnosed as allistic when you're actually autistic. I don't know the statistics for people that aren't autistic seeking a diagnosis. If you are told you're not autistic, there's always the second opinion.

The list thing is always a good idea. And even if it's not autism, the list would be a good starting point to finding out what you do have. Rudy Simone and Tania Marshall have some good lists for females.

 

[Ste11aeres]

Check the online definitions of Asperger's, with emphasis on the "triad of impairments", then write a list of the symptoms that you display, giving examples of incidences in your life of how these symptoms prevent you from living a "normal" lifestyle. Basically get it straight in your mind exactly what you wish to tell the specialist, so that nerves don't get the better of you on the day and you don't forget to mention something important. Being seen so quickly may be a little frightening but consider that in some parts of the world other people gather dust stuck on waiting lists, sometimes for years, before they get their much desired opportunity to see a specialist. Good luck with your appointment.

vanillabuzz Remember, the specialist might understand Aspergers, but he doesn't know you very well.

He only knows what he can observe of your body language and manner, and what you tell him about yourself. It's possible for him to give you a wrong diagnosis if you present an inaccurate version of yourself to him. So you need to make sure to give him an accurate representation of your real personality. If you have learned NT social mannerisms in order to fit in the "normal" world, let go of those and go back to the Aspie mannerisms that feel comfortable. (Don't put on fake Aspie mannerisms since you don't want to mislead, just do what comes naturally) As BIMOG said, prepare a verbal and written list of the things about you-including both in your childhood and in your current life-that correspond to Aspergers. Prepare to state everything verbally, but write it down also in case you forget anything. (You can tell him that you prepared very hard what you would say. (such preparation is an Aspie thing too )

 

[Nitro]

As ste11aires already stated,your diagnosis should be based on your entire lifetime,not a short excerpt of it.
Preparation of a set of notes is another great suggestion so nothing gets left out.When you are on the ropes,it is quite easy to forget what to say next and having it all written down up front will be useful to your pros.
Beware of a speedy diagnosis,it takes time to sort it all out.If you are not satisfied with their answer,seek multiple opinions if possible. You are your best advocate because you know who you are and accurate information is vital to getting a satisfying end result.

It is quite true that one can become a text book aspie and play a role instead of their own true person. Please take that into consideration and answer questions truthfully and to your best ability.

Good luck with your next steps and remember that there are many here who have already walked a similar path who are willing to help out.

 

[Datura]

Your fears echo mine, vanillabuzz. Though I am mostly sure I don't have autism the question nags at me, and going in for a diagnosis only to be rebuffed fills me with dread.

I have no advice other than to get your facts in order and be yourself, and that has already been said.

 

[Progster]

I've been through this experience, too, and I had the same fears as you do. In my case, it helped that my mum confirmed at the interview that I had the symptoms both as a child and as an adult. I asked for many opinions from family members and other aspies/people knowledgeable about autism to be sure that there really was a case for my having Aspergers, and I wasn't just imagining things. Just be yourself, and the doctor will be able to get an accurate picture as to whether you have AS or not. Also, as others have pointed out, preparation helps. Prepare a list of traits and how they affect you in your daily life, giving at least one example for each trait, and a list of the ways you were affected as a child. For example, sensitivity to sound - as a child, scared of loud noises such as balloons bursting, fireworks, thunder, easily distracted by sounds, difficulty concentrating at school. As an adult, loud sounds hurt and can't concentrate at work when there is background noise, hard to socialise.

Good luck!

 

[NiceCupOfTea]

That aside, there is something that bothers me even more. I'm afraid he will say I don't have Aperger's. I have found so much comfort in knowing that could be what I have that not having it would put me back in square one. What if I'm just weird? I'm really afraid of being diagnosed as NT. I thought I would voice it and ask if anyone has gone through these fears. What is the process of diagnosis like? Can he look at my brain and be like "Nope, just an NT with social issues." Even though my problems go way beyond that. I don't know, I'm just overall scared and I thought I would vent.

Felt a bit like this. I dealt with it by trying not to hinge everything on getting a positive diagnosis. I don't know whether it helped or hurt that I had a pre-assessment a few months before the main one, which I was convinced I had 'failed' (i.e. the interwiewers [there were 2 of them, although one did 95% of the talking] didn't think I had autism).

I didn't prepare for the main assessment at all. I lurked on Wrong Planet for months beforehand (sorry AC), but I didn't plan what I was going to say, make lists, etc. Nor did my mum. Her testimony was probably invaluable to me getting a diagnosis though, because she could recall stuff about my early childhood that I couldn't. She was the only person I got involved with my diagnosis. I was lucky to have a mum who knew that there was something different about me and there always had been. Most parents - judging by what I've read online - seem to retreat into denial.

Beware of a speedy diagnosis,it takes time to sort it all out.If you are not satisfied with their answer,seek multiple opinions if possible. You are your best advocate because you know who you are and accurate information is vital to getting a satisfying end result.

This is called "shopping for a diagnosis", and I disagree with it. I'll make allowances for one incompetent specialist, maybe I'll even stretch it to two. But if 3 or 4 specialists tell you that you don't have Asperger's, I seriously would start taking the hint.

 

[Chuck2]

I'm in the middle of this myself. It's very frustrating when the first Dr. says after three expensive visits, suddenly, that he has no way to test me as being my age and not a young child. The next place I tried sent a form asking me questions about my childhood and I couldn't answer many of the questions because my mom has passed on my dad doesn't remember. I also have bipolar. Both are very common on both sides of my family. Two cousins are Aspie and I think my dad might be too. One is a meteorologist and another is in grade school. When I was in grade school they didn't even test for AS. I need to find a place in the Dallas area who can actually test a fifty year old man. I have trained myself to not show any signs. I just need to know if I am on the spectrum and what do I need to do differently to live in this world. I scored very high on the Aspie quiz, higher than either of my cousins but that is all based on things I like and don't like.

Just trying to say that I can relate.

 

[vanillabuzz]

Thank you so much, everyone! BIMOG, AsheSkyler, Ste11aeres, Nitro, Datura, Progster, NiceCupOfTea, Chuck2 thanks for the lists and tips. Thanks for the reassuring and honest words, too. Datura, I can understand the fear and hesitance. I was so filled with fear today. However you decide to go about getting a diagnosis, or not, just do what you feel is best for you. Thank you Chuck2 as well, and I really hope you are able to find a place in Dallas that will test you! The doctor I went to was also mainly focused on children but he accepts adults as well. I was in there for like two hours and a half, between talking, filling out questionnaires and having the EEG done while he talked to my mom in his office. It was worth it though as he officially confirmed I have Asperger's. It was surreal to hear it coming from a doctor, never mind an expert in his field. It was good though, although I'm still letting it all sink in.

 

[Chuck2]

That's great news. Thanks for the tip too.