Getting Diagnosed / Assessed - DON'T

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This is my opinion regarding getting yourself diagnosed / assessed for Aspergers.

Do not go to your GP or whomever and say "I think/know I have aspergers/autism". And then go on to list all the symptoms you have which you feel means you have autism because you researched it on line. They're just going to think your symptoms are psychosomatic based on what you read and that you're being a hypochondriac. That's what they're going to want to cure you of and they're going to probably focus more on what's not autistic about you than what is.

Just go in and tell them you think something's wrong but you don't know what - and you don't know, that's why you're getting tested.
Tell them your symptoms, but don't do it in such a way that you sound like you're quoting from a list of AS symptoms. Act like you don't know what it is (because you don't for sure). Just go in with the attitude that you know something is wrong, you think you might have a screw loose or something and you want to be tested to find out what's wrong. Be unassuming.

You probably won't even have to ask to be tested, the GP or whoever will probably prescribe it. Doctors seem much more ready to make a diagnosis and suggest further testing make referrals etc when it is their idea not yours.

Aspergers is becoming more and more readily known. There's a zillion articles about it online now, Scores of You Tube videos. Big forums like this one, Lists of famous people who supposedly have/had it etc.. And I'm sure a lot of GPs and shrinks etc, have people coming to them all the time telling them they read about Aspergers on line and now they're sure they have it.

I think anytime someone walks in and says, "I think I have Aspergers" they roll their eyes and think to themselves "take a number, you hypochondriac".

And to be painfully blunt, even I think some of you may be hypochondriacs. Because some stuff people write about themselves just doesn't jive with being autistic. You know, when I was a kid, they all said "this kid has some serious problems" and gave me batteries of tests (all at the US government's expense) and then yanked me out of the public school system and placed me in with developmentally disabled children. If you don't have that kind of a background, you may not have autism. You just may be socially awkward and somewhat OCD or whatever. So don't go in announcing "I have Aspergers". I certainly don't have to. All I have to do is show them my documented history of behavior, diagnosis and treatment.

Last edited by briankelley on 29 Mar 2013, 10:20 pm, edited 3 times in total.

So true!

When I first found this site, I wanted nothing more than to be professionally diagnosed. But, with Asperger's being eliminated from the DSM V, and the fact that I don't have insurance, I no lomger feel the need. I know what I am. I give less than a crap if some douche with a piece of paper on his office wall agrees with me.

People are insecure that way. Good guidance!

Disagree.

Research and be prepared with diagnostic evidence that supports what you know to be true.

I did my own ADHD diagnosis 2 1/2 years ago & brought a stack of evidence to the doc. I can speak to medical doctors in their lingo with proper terminology and knowledge to support what I say. I had a lifetime history of evidence to prove my claims. I also prescribed my own meds & dose based on a lot of research as well. I knew I'd have to go for an EKG first, spelled it all out for my doc.. he just had to cross reference my info & confirm it, send me for an EKG & write a 'scrip. He thanked me for teaching him about the Amen Test for ADD/ADHD and now uses it to help diagnose other patients.

I have a lifetime worth of evidence that completely confirms AS, too, and I intend to take it and be prepared for an eval. When I first told my GP about it, after a few mins he said I knew a lot more about it than he did - and told me to find a local Psychiatrist that specializes in diagnosing it in adults & he'll make the referral no problem. He's not one to waste medical system resources, either.

I was officially diagnosed seven years before I was told that I had AS, but considering what happened in December, I fear the repercussions of having a professional diagnosis on paper anywhere.

In essence, I fear that inquiring about AS to a GP or mental health professional will lead to being blacklisted as a sociopath.

ing a lot

Last edited by briankelley on 30 Mar 2013, 4:32 am, edited 1 time in total.

i think the information you are providing is valid.

im quite rigid though; i dont exactly support the idea of modifying the message to suit the receiver (i think more than a few of us may have this 'problem').

when i come to this forum or research autism spectrum disorder, whether in books or online, i seek out information that applies to me. what i dont do is apply the information to me (i think this might be using 'deductive' rather than 'inductive' reasoning).

i think the medical community should chill out. i mean, i feel bad for them (psychiatrists, im talking about) because the use of psychopharmacological drugs is based on the scientific method: begin with a hypothesis, measure pre and post intervention. yeah, we learned that in fourth grade. i honestly think a fourth-grader could treat me on psychopharmacological drugs just as well, if not better, and these poor psychiatrists have medical school bills to pay.

an unintended consequence of your advice though, could be that some people decide not to seek out answers for fear that they cannot help but be inductive.

also, there is an added difficulty in that not anyone is 100% autistic any more than anyone is 100% neurotypical (humans have not seemed to evolve past the belief in the 'either or'). my twin brother, for example, has some autistic traits. after i shared my diagnosis with him, i believe he did some online digging and discovered these traits that he has. occasionally, he will bring them up to me (his own symptoms) with concern, and i remind him of the 'spectrum' of nearly everything humans still consider to be bi-polar (only two-sided) issues. i tell him that if he has no issue functioning, which he reports he doesnt, then to 'go with it.'

discovering you are 'on the spectrum' shouldnt be a discovery. all humans are on many spectrums simultaneously and every human is on the autism spectrum (if only .001 out of 100).

Seconded.

i understand the feeling behind your fear, but not the logic. sociopathy is a separate diagnosis and is a personality disorder, rather than a development disorder.

The general public does not know the difference.

There you go. You have something more substantial than a suspicion based on something you just learned about online. I'm not saying online revaluations aren't legitimate. But I do think if that's all someone has, it might be better to have the doctor tell that person they have it, than that person trying to tell the doctor what they think they have.

With you and me it's a no brainer. It's obvious.

Here's a sample of my history starting at age 5:

K: Dramatic, immature. Needs to learn to listen. Academic level is extremely low. Needs to work on eliminating aggressive behavior. Keeps to self does not interact well. Inattentive. Wanders off.

1: Requires close supervision on playground, wanders off assigned areas. Has improved somewhat in controlling temper. Must not be pushed. Needs constant reinforcement.
Still applies as above.
Responds to quiet talk and sympathy when he explodes. Does not participate well with others. Isolates self and is standoffish. Excellent verbalization stills but has poor social skills. Accident prone; poor motor skills. Perceptual difficulties.
Behavior problems.

2: Has been segregated from classmates and given remedial assignments. Is still very far behind academically despite excellent verbalization skills. Still unable to read beyond sounding out basic words. Inattentive. Hyperactive, has difficulty staying still. Spins back and forth in chair and fidgets. Sketches and scribbles instead of performing assigned tasks. Is working hard at improving academically and has made progress, but is still far behind. Seems to learn better on own than within classroom participation. Has difficulty conceptualizing. Motor skills have improved somewhat but still uncoordinated. Requires constant supervision. Does not interact well. Becomes easily frustrated and loses temper quickly.

B2 Has difficulty paying attention, mind wanders considerably. Does not maintain eye contact. Daydreams. Just sits and stares. Wanders off. Truant. Expresses high intelligence when communicating verbally but academically and socially inept.

Children's Hospital: Rosenbloom.

Perceptual and cognitive - Below average.

Academic - Below average.

EEG - Anomalous.

Motor skill - dysfunctional.

PDD-NOS. [Pervasive Developmental Disorder-Not Otherwise Specified.]

Assigned to EH [Educationally Handicapped - Developmentally disabled]

5: Placed back in mainstream educational system. Only able to handle 1/3 workload. Behavior difficulties. Difficulty focusing on assignments. Poor participation. Absent a lot.

B5 Reassigned to EH

6: Oak Hill Private School for Developmentally Disabled.

(This is the school I was sent to when I was 11)

http://www.theoakhillschool.org/

Last edited by briankelley on 29 Mar 2013, 10:55 pm, edited 4 times in total.

Everyone is different, not all of us on the spectrum had those same problems.

I never had problems in Academics and was never placed in any special education program. I was able to graduate from a top university without any major problems. Academic issues and Autism do not go hand in hand.

I have a somewhat similar history from school, although things took a different turn than they did with you (I didn't end up near special education until the 5th grade and almost through high school), but my parents interfered directly in terms of interventions, diagnoses, and accommodations, because they believed I was "too intelligent" to be developmentally or learning disabled.

But, I don't think everyone will have a history identical to mine or identical to yours because we're all different and we're all in different situations. There are people on this forum who spoke later than usual (sometimes much later) and yet somehow were never diagnosed until adulthood, and I would argue that such a history is far more stereotypical than either yours or mine.

There are too many confounding possibilities to make a flat statement that "if your history does not meet these specific criteria, you are not autistic."

I am not sure what you mean by "doesn't jive with being autistic." My understanding is that if you've met one person with autism then you've met one person with autism.



I would say they do go hand in hand, but they don't go hand in hand for everyone.

i had this same convo with myself last summer, trying to decide if i had aspergers or if i just had social anxiety + OCD + sensory issues + other personality issues. My younger sister has since been diagnosed with ASD (really AS, but ASD since they got rid of the AS diagnosis), which since I hadn't told my parents about my suspicions about myself, and they had originally gone in to the doctor with her b/c of something completely unrelated, the doctor brought up the diagnosis completely on their own. In fact, my mother called me later still in a state of shock.

Based on her diagnosis and our similarities despite a 13 yr age difference, I'm now 100% sure I am also on the spectrum. Neither my sister nor myself have the same issues you describe. Of course that's what makes it a spectrum. One of our cousins is on the lower end, and he didn't speak until he was about 4. We just happen to be on the higher end.

I would agree that those on the spectrum are more likely to have lower academic abilities, and are more likely to need accommodations, but their are still many of us on the spectrum who are able to do well without any help.