Dear Aspie: Should I Get a Diagnosis?
Dear Aspie:
“I only recently stumbled on this website and I’ve found it really interesting. I’m 24 years old, and I was wondering what steps I would take if I thought I had Asperger’s. Also, if I did have it and I was diagnosed, would it even be beneficial to know?”
–ip_outcast
Read on for GroovyDruid’s response!
Dear Aspie:
“I only recently stumbled on this website and I’ve found it really interesting. I’m 24 years old, and I was wondering what steps I would take if I thought I had Asperger’s. Also, if I did have it and I was diagnosed, would it even be beneficial to know?”
–ip_outcast
[NOTE: ip_outcast lives in the London-Surrey area, and would be grateful to any WrongPlanet members who would PM him information on recommended diagnosis resources in the area. Thanks!]
Most aspies who seek diagnosis as adults struggle with these questions: how do I get diagnosed, and is it worthwhile or even wise?
It is hard to generalize, but I will put it this way: I’ve never heard anyone regret getting a diagnosis. Many aspies find that a diagnosis helps them build agreement with people, to explain their peculiarities in a way the public can comprehend. Adults who get a diagnosis often describe an unexpected relief after a diagnosis. A diagnosis gives closure to search that, for many, has been ongoing ever since they could remember. I was diagnosed as an adult, and I found it helped me a great deal. I’m glad I got an official diagnosis.
In addition to the personal closure, a diagnosis has a more serious side to it: it gives you legal status as socially and cognitively disabled. Some aspies don’t feel they need this status. Others do. For example, many aspies would find university untenable without their special dispensations to have more time on tests, receive help with note-taking, and complete alternative projects in place of ones they find impossibly difficult. Without an official diagnosis, you might as well whistle in the wind as ask the university for these accommodations. Unless you are certified, they couldn’t care less.
The same goes for the workplace. Some aspies need no accommodation and don’t even tell anyone they have AS, while others find that they can only work in certain aspects of a business, usually away from frequent personal interaction. With a diagnosis, you have far more leverage to negotiate accommodations in the workplace. If you inform your employer that you have a disability and ask for accommodation, and the employer fires you or refuses to accommodate your request, you have grounds for a damaging and embarrassing lawsuit. Without an official diagnosis, the employer simply says that the supposedly-AS employee wasn’t helpful with customers, and that’s that. Getting a diagnosis after being fired will work, but it packs much less of a punch, as you can probably imagine.
Medical doctors, psychologists, and psychiatrists render diagnoses of AS in the United States. The patient goes in for an evaluation—usually accompanied by a parent to fill in childhood history—and afterwards receives a written report containing the offered diagnosis. The interview usually takes from two to four hours. The evaluating professional covers childhood and adult history, family and friendships, social and personal habits, subjective feelings, and often gives an abbreviated or full IQ test.
I do not know equivalent procedure in the UK, where you reside, but I suspect it’s the same, or nearly so. Wherever you are, though, I can offer you one golden piece of advice: seek a diagnosis from a health profession who deals regularly with patients on the autism spectrum. First, a psychologist or doctor who deals with aspies regularly will know how to make you feel comfortable, and that comfort makes a big difference when you are in the vulnerable position of having your entire life evaluated and possibly labeled. More important, though, I have heard one horror story after another of aspies who went into their local head shrinker—or two, or three—and received several wrong diagnoses before finally going to someone who knew what they were doing. This can be frustrating and traumatic, since a possible diagnosis of autism is hard in itself. But when an ignorant mental health professional follows up with a blithe diagnosis of this-is-all-in-your-head-itis and mild social anxiety, it can knock you flat. Don’t do that to yourself. Go to a pro.
I hope that some of our members here on WrongPlanet can point you toward a good professional in your area. In the absence of that, you might contact the Nation Autistic Society, a UK-based group, and ask for a referral: http://www.autism.org.uk/
Best of luck, whichever way you decide to go!
Send your questions to “Dear Aspie”! Just PM your question to GroovyDruid or send an e-mail to [email protected]. Questions of a personal nature may be submitted anonymously, though printing a user name is preferred. “Dear Aspie” reserves the privilege of editing for spelling and clarity. Thanks for your submissions!
16 thoughts on “Dear Aspie: Should I Get a Diagnosis?”
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I’m 17, everyone around me, friends, family, classmates always found me weird, I read about the Syndrome Aspeger and have all the features, but it’s still better to have an official diagnosis, we should talk to proficionais even to have the municipalities to do and look for, how to explain to everyone the reason for our behavior “flashy” …
Thank you so much for this. This is the most helpful thing I have seen on this ever. I have been asking around and people just tell me go see a doctor. I saw a psychologist last year for four visits and then he tells me he doesn’t have any way to test me for Autism. Jerk. That was expensive. I don’t know if I’m on the spectrum but I have so many of the traits that it makes it hard for me to navigate the system and get a diagnosis. This has caused me a lot of emotional pain and I have had no help to find the right doctor. I may not need help now.
Thank you so incredibly much.
Marduk, are you in the UK or elsewhere? In the UK there’s a legal requirement about the pathway to diagnosis. GPs should refer people who make a case for it on to appropriate specialists.
There’s information about that here: http://www.autism.org.uk/About/Diagnosis/Adults/process
You could print out a ASD test from the web, fill it in and bring it along if you feel as if you might find it hard to explain things enough.
There is actually a large number of diagnostic tools for adults, but it seems they have to be administered by qualified experienced practitioners.
If you aren’t in the UK, then it sounds as if you might need to do much more advocating for yourself, but maybe people from your country here will post.
I’m an older woman with Aspergers but don’t have an official diagnosis. I’m pondering the same question you are. On the one hand, I’d like to have it confirmed, but on the other, I’ve lived this long with it, and probably have acquired most of the coping skills I need. If I were younger, I’d definitely go for an official diagnosis because I’d probably learn a lot that would be useful.
I would like a diagnosis. A psychologist has recommended I get a dignosis, but there is none to be had in this health authority (Calderdale and Huddersfield in the UK) and no funding for out of area funding.
Is there a way I can get a private diagnosis, and how much would it cost?
I’m 23 and considering seeing a psychiatrist regarding possible AS. The more I read about it and talk to aspies the more it seems to fit and even if I’m not on the spectrum it’s a relief to talk to people who understand a lot of my struggles. Getting an accurate diagnosis would be a literal lifesaver for me. It would give me a path to recovery and a way to communicate with people close to me.
Best of luck to all of you seeking answers!
I need to be diagnosed.
I have Russian citizenship and right now am studying abroad in Israel. It’s vital to get the diagnosis before I’m kicked out of the university. I asked my advisor but she has no clue what should I do and where should I go with this. She said I need a psychologist who speaks Russian, but I highly doubt there are any Russian-speaking specialists who work with anything besides correction. I also doubt that I really need a Russian-speaking specialist since I’m fluent enough in English and it doesn’t seem to be a diagnostic criteria, but that’s what my advisor said. I also doubt it’s a psychologist and not psychiatrist. I’m confused beyond bearable so I registered in this community and wrote this message.
Dear ip_outcast,
Even in this forum I find myself again having the minority opinion…
I am 54, doctor of science in electrical engineering, 17 years research in IBM, married with two children.
Ever since being one year old(!) I exhibited clear patterns of autistic behavior, and was unable to make friends throughout my whole life… but my father was not accepting this, and he was even hostile to all mental therapists… This is why I have never been diagnosed – he didn’t let anyone dare to do it… He has pushed me forcefully through the neurotypical education system… I had unbearable suffering but survived… Learned my way forcefully all the way up, while staying in the closet all my life… Only as an adult I found out myself who I was…
Today I have no motivation to have any official diagnosis… I agree that I have been suffering more without it, but I still believe that I would have not get to where I am now if I did… Stigma hurts – both by others and by yourself… Sometimes it is better not to make it too easy on yourself… It is not a conclusion of mine – it is just the other side of the coin to consider… I would not force any of it today on an autistic child (if I had one) but I think it is justified today to testify on my own life…
Psychotherapy was very ignorant regarding Autism in the sixties… Regarding it as something which requires being institutionalized for life… Blaming the mother for not caring for her baby… Regarding autism as a kind of psychosis…
Today we definitely understand autism much better, and support autistic individuals and their families much better…
And yet the stigma does its damage… And in some cases (definitely not all cases, not even for all the highly functioning autistic people) we may better not lower the bar too much and not give too much discounts…
Today I know that for most individuals with autism my father’s choice and decision was the wrong one… But persons like me (or Temple Grandin, for example) are here to prove that sometimes we can do much more than expected from us… Special minds require special efforts sometimes… If you are different you often have to fight harder to prove that you are not less…
I am not suggesting anything in your special case – Just for you the other side of the coin to consider. It is definitely up to each person to decide for himself. Me (and I think most autistic persons) are very supportive of individuality and of making your own choices in life (as much as you can…)
Dahdee (David Goren)
As the long term wife of an 83 yo undiagnosed male , I know the frustration and anger that comes with the
struggle to find competent help. Now there is so much help and understanding for those in the spectrum
just beginning to seek help. I envy them but it’s very hard not to feel cheated .
The similarities are eerie among my own story and those of other un-diagnosed individuals! Like Dahdee, I’m 54, brought up through the typical system. Teachers were kind, parents knew my “potential” which, to their clear disappointment I never reached. I vowed never to tell my son “you have such potential” because it’s not a compliment, or even encouragement.
Like Explorer, I think I’ve acquired so many coping skills that my “quirks” aren’t noticeable anymore — that is — until they are. I went searching for help last night after a haircut. Nothing went wrong, I suppose, but nothing felt right. Silly little things. I tripped over a branch on my way to the stylist’s house. No worries, I do that all the time. But it was a bad start. I’d never been to this stylist before, so… new person to get used to. Her dog didn’t like me which is odd, except that this past week no dog has because mine had surgery a week ago and I think they smell the wound and the fear. The stylist knows someone I work with, and seems chatty, so I know he’ll find out soon enough that I was there. I like to keep some things to myself. She took an hour with my hair, running her fingers through it, putzing away, clipping, cutting, letting 1/4 inch clippings fall in my face time and time again as she worked over it again and again. Then came the goop, more fingers through my hair, a blowdry and hairspray (ewwww!) which I always refuse at other places, but I didn’t want to be rude. Then more fingers through my hair. She finished by adjusting my collar. When my husband adjusts my collar I slap his hands away because I can’t stand the feel of it. The cut cost 2 times what I typically spend, which hurts. I drove home, seeing a near accident on the way. I made it all the way home and in the door before I burst into tears. I showered, washed my hair 3 times, crying the whole time. I can still smell the product she put in my hair. It dawned on me that perhaps other people wouldn’t have gotten upset. I even hear that other people like having stylists run their fingers through their hair!
I’ve thought for years that perhaps I am an aspie, and decided that it was time to find some understanding friends.
Now comes the debate, to diagnose, or not to diagnose!? That is the question.
I am a 40 year old female. I’ve struggled my whole life and always felt like I was from a different planet. Last year I began researching Aspberger’s and realized I have all the traits in varying degrees. As I read these descriptions and personal accounts I cried because they were describing me and now I finally understood. My whole life suddenly made sense. Like a puzzle coming together all at once. My brain is different. I would like to seek a medical diagnosis but it seems very expensive and I can’t afford to do it. A friend had her daughter tested, it costed $2000. Is this normal? I live in NW Florida. Anybody know of inexpensive or free testing around here? It’s so sad to me that mental health care is so expensive that people who really need help can not afford it.
I am on a list waiting for an assessment. I am a 47 year old male. Took me two years just to be able to ask as I tend to get mindblank situations when I get to see a doctor or am in a dentist or hospital. No idea why as the only other place I get this is should I try to go on a jobcentre which though in recent years I should be signing on, I am so nurvous due to past experiences and due to that I am unable to work full time anyway these days…
I do occasionally work… Just before Christmas and the peak of summer in a job I can almost do with my eyes closed! If I am on the autistic spectrum, the job involves my secondary special interest.Low hours part time temporary work which sometimes eats up half the pay just in travelling. (Not that I can cope with working more then a few hours in a day at a time these days).
I never ever in the past would have even thought that I could even have the possibility of being autistic. I believe this is because I knew nothing about the condition other then the extreme cases where unfortunate people are extremely dissabled with it, so when people (I have had quite a few in recent years) come up and ask me if I have asperges syndrome or if they say they think I have it, I laughed or just simply said “No”. I’d probably say a joke about it like “If I had a pound every time someone said that, I’d be several pounds richer!”
Anyway, my lovely mother who at first thought like I did as she didn’t exactly know what to look for either and when I later showed her a few things, could identify herself fitting some of them, at first was trying to advise me not to be assessed. But I have reached a point where if my Mum wasn’t around to provide food and shelter, I would not cope with working enough to earn myself an income to actually support myself. Only once in the past have I had such a job and it was to do with my main special interest/hobby and it was well paid… But I eventually had the pressure build up so much and it all snowballed where I eventually quit. Most jobs I have been in have lasted about two years before I moved on or I took temporary jobs and in all my employment history, only one job did not involve one of my hobbies and this was the toughest job I ever worked at.
Anyway. I had not realized how difficult it could have been to get to be on the assessment list as the doctor I saw (One I had not seen before) didn’t think I had a chance of having the condition but fair play, the limited information I was able to give her as I kept getting mind blank (I wizely brought my Mum in with me though at this time my Mum was also sceptical), so when I could not talk, my Mum took over. The doctor had very little to go on, but passed on the information to the assessment team and they have accepted my case.
Am I on the spectrum? I have yet to find out. One or two new friends I have on Wrong Planet are convinced I am, but I seem to bounce back and fore between thinking I am on the spectrum and dissbelieving that I am, so it could go either way. (I seem to habe had my whole life of mildly struggling but not fitting in any one catagory or another! Ah well. At least if I am tested and am found not to be, I know I share some traits and I am starting to understand myself more, which is something that I inwardly often puzzled about to try to explain why I am different).
I feel that there is a strong chance that I have AS or something similar. I am middle aged and do not have an official diagnosis. Accepting that I may have something similar to AS has helped me understand and deal with many aspects about the way I communicate and think differently than most others. I have a technical job and as part of my job I regularly testify in court proceedings as an expert. I am confident that my different way of thinking helps me excel many areas of my profession and also helps me, especially in cross examination, as an expert witness. I am afraid that if I had an official diagnosis, then it may come out in the voir dire or depending on what I am asked to qualify as an expert I could be asked if I have ever been diagnosed with mental disorder. If I am diagnosed with Asperger’s or something similar in the DSM-5 then I would have to answer affirmative which would likely not be good for my testimony if I am even allowed to testify after that. Also, the opposing side would try to use that against and attempt to leave doubt in the jurors minds about my cognitive abilities and skills. Ironically, my different way of thinking and processing is likely what helps me to excel in my job and be respected as a top expert in my field. But people who don’t understand AS or whatever I may have would likely not understand that.
So for myself in my scenario and my profession, that is the reason I am waiting to get an official diagnosis.
I have been told by several people who don’t know each other that I “probably have Aspergers”. However I have little interest in being labeled as having a disability, and therefore have never pursued a formal diagnosis.
I was tested for IQ in my 20s, and my IQ was high enough to get into Mensa. Why would I consider this a disability? I can do highly complex logical work in my mind without a great deal of effort. In my own mind I am normal, but the majority of humans are emotionally driven and illogical.
Remind again why I would want to be normal? Or why I need their acceptance?
Yes please get diagnosed. I’m personally sick of the arm chair buzz feed crowd who decided after answering a few questions from buzz feed or some YouTube video they’re suddenly spectrum and then proceed to grift and clout chase off our everyday often playing off some things that are really uncomfortable to us either physically, emotionally or both. Like one tic tok video series I saw recently on a commentary channel had this couple claiming they were both high functioning autistic and had tourettes. You could clearly tell they were faking it. Like “shimmy kisses”? I don’t know about you but when and if I stim I certainly don’t show affection or want to or even want to be touched. So I urge the writer please contact the nhs please get a proper diagnosis that can be verified with papers.
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