Who diagnosed you and why ?

[Karin]

You have my best wishes for your daughter. That must be really rough for you and her alike.

Thank you! I was going to say it's equally hard for her brother and dad but I think not. Not from lack of caring, but their Aspergers seems to shield them from some of the worrying and makes some of their questions, and thus answers, more simple.

 

[NiceCupOfTea]

It's your social skills that are probably skewing your results on self-tests, since you've had decades to learn and adapt successfully. Once ASD entered my family conversation through my own diagnosis, it became clear very quickly that my stepfather is also an Aspie, but his RAADS-R and AQ tests come up squarely NT -- extremely so in social categories. He's Italian born and was raised in a traditional Italian American immigrant enclave, so he was socialized to be very communally-oriented. We all agree that it probably helped him overcome common Aspie social deficits from early on, confounding diagnostics now.

My greatest wish for the ASD community is for a truly accurate diagnostic battery for adults in middle age.

No, I don't think you can overcome autism that way. My extended family of Irish origin are extremely extroverted and sociable and had regular get togethers. As a small child, I also lived in a cul de sac where all the children in the street would play every day. It made absolutely no difference to me: I wouldn't speak until I was 5 (my parents took me to get my hearing tested) and I certainly didn't play with the other kids.

Otherwise if that was true, the cure (or at least 'treatment') for autism would actually be really quite simple: make autistic children socialise in family groups. It's obviously not that simple.

Anyway, I'm 40 now and my social skills are still dire, although provided I don't have a 1-to-1 conversation with anyone I can probably pass superficially as 'normal'. But anyone who's doing so well they are indistinguishable from an NT - particularly in the social arena - I would wonder whether they were ever on the spectrum to begin with. Or if they were - like my dad - deluding themselves about their social competence.

To (finally!) answer the original topic question, I got diagnosed at the age of 39 after a referral to an adult autism clinic. My mum suspected I had asperger's when I was in my teens, but for various reasons I can't be bothered going into right now nothing was done about it for another 20 years. Once I actually spoke to a psychiatrist who specialised in adult autism, I got a diagnosis.

 

[Slithytoves]

No, I don't think you can overcome autism that way. My extended family of Irish origin are extremely extroverted and sociable and had regular get togethers. As a small child, I also lived in a cul de sac where all the children in the street would play every day. It made absolutely no difference to me: I wouldn't speak until I was 5 (my parents took me to get my hearing tested) and I certainly didn't play with the other kids.

Otherwise if that was true, the cure (or at least 'treatment') for autism would actually be really quite simple: make autistic children socialise. It's obviously not that simple.

I agree that you can't "overcome" autism that way, but there are plenty of Aspies right here on AC who have learned better social skills over time, through a combination of observation and practice in social environments. As with many other things, though, we can usually adapt much better at stages of development when we are most neurologically flexible than later on in life. How effective we are at adaptation likely depends on personality factors and the severity of our traits. So you're right, it's not that simple. It's actually pretty complicated.

My psychiatrist (and my stepfather's psychologist) recognize that there are a great number of factors that influence our social development, and that neuroplasticity to cultivate better social skills over time is very possible for many on the spectrum. (And it's agreed that this isn't the same as "cure".) I, my mother and other lifelong loved ones all recognize vast improvement in my Asperger's-related social deficits over the course of my life. Some of this improvement was incidental, and some has been a conscious effort to grow/change. Maybe I just got lucky in my particular load of symptoms and traits, but my case is not at all uncommon. It's one of the reasons why so few adults with Asperger's are easy to spot, even by clinicians.

 

[NiceCupOfTea]

I've spent literally my whole life observing other people socialising, but it's like watching somebody do PhD level maths on a blackboard: just because I'm watching them doesn't mean I can do it. I've also had enough time to practice and I still can't do it. I just have nothing to say to most people: I'm boring.

I also think it tends to be obvious when somebody is not naturally good at socialising: they come across as being a bit awkward, false, or whatever. Some people overcompensate by being obnoxious and forcing their opinions down your throat (you can stop reading now, dad); others laugh insincerely or at not entirely appropriate times; and so on. How these types are treated by the socially intuitive NTs of the group varies, but if nobody ever says anything to the socially incompetent person (out of politeness, fear of hurting them, etc.), then that person may not realise that they are being indulged or tolerated.

Put this way: difficulties in social communication, interaction and imagination are at the crux of the Asperger's diagnosis. Without those impairments there would be no diagnosis. All the other stuff - sensory issues, special interests, etc. - are just the icing on the cake. They are not crucial to a diagnosis, but social and communication impairment is.

Asperger's also does not go into 'remission', unlike physical diseases. There aren't times of your life when you have asperger's and other times when you don't. It's always there.

None of this means that aspies can't improve their social skills, have friends, or whatever. Despite what I said in my first paragraph, I think I have got better at talking to people to some respects. But I'm not a natural socialiser and wouldn't be if I lived another 1000 years. If I didn't care, it wouldn't matter a jot, but the tragic thing is I do care. I do want to belong. I do want to be part of a group, form a family of my own. That's the limitation of my condition, and it's one which has led to lifelong depression.

 

[Slithytoves]

Put this way: difficulties in social communication, interaction and imagination are at the crux of the Asperger's diagnosis. Without those impairments there would be no diagnosis. All the other stuff - sensory issues, special interests, etc. - are just the icing on the cake. They are not crucial to a diagnosis, but social and communication impairment is.

Asperger's also does not go into 'remission', unlike physical diseases. There aren't times of your life when you have asperger's and other times when you don't. It's always there.

I agree that difficulties in social interaction, etc., are at the crux of the Asperger's diagnosis. That's a matter of record. At least when Asperger's still appeared in the DSM, though, clinicians took both childhood and adult presentation into account when making a diagnosis. This leaves room for an Aspie lucky enough to have become very well adapted the opportunity to still be identified and diagnosed. It was largely my childhood presentation that convinced my doctor that I am an Aspie by clinical standards (like you said, nobody outgrows autism), and the interview process revealed dozens of Aspie traits outside of the clinical specs. A good diagnostician takes all factors into account. And as I said before, it was other Aspies who first identified me, largely based on the long list of traits that don't appear in the diagnostic manual(s). I do believe there is something to "A-dar". Since my diagnosis, I have also been gradually developing an ability to spot other people who are on the spectrum. (I had previously wondered how some Aspie friends of mine can do that.)

I just said this on another thread, to someone who was paraphrasing Tony Attwood:

"There is no neuroscience to support the assertion that people can outgrow autism. High-functioning autism (New edit: I failed to also include Asperger's) exists on a continuum of severity that ranges from severe impairment to what amounts to just a few relatively minor traits. For those on the "low end" of the severity scale (i.e., who have a mild case), deliberate and sustained effort/therapy has been known to allow some autistics to adapt to the point where they become functionally indistinguishable from an NT... He's never stated that the differences in actual neurology of people on the spectrum can ever be cured or outgrown."

So I agree with you completely that Asperger's doesn't go into remission (or disappears).

If I didn't care, it wouldn't matter a jot, but the tragic thing is I do care. I do want to belong. I do want to be part of a group, form a family of my own. That's the limitation of my condition, and it's one which has led to lifelong depression.

I'm sorry to hear you've had such a struggle because of your particular range and severity of traits. Sometimes I feel bad talking about my milder case because I know that others here have a harder road than I do, but nonetheless, the things I say are true of my experience, backed up by my doctor and therapist, and well-researched on my own time. There is a range of experiences of Asperger's. All of them are valid and part of our community culture, here and in general.

I hope over time that you can find a level of functioning you can feel at peace/satisfied with.

 

[AceCadet]

I was diagnosed by one of the doctors at a psych hospital, though it took a while before she realized what was really going on.
If you feel you need to take the step of getting officially diagnosed, I say go for it.

 

[Rhymer]

I'd always been a bit different. My teenage years where interesting to say the least. When I was 19 I started to suffer from severe panic attacks and anxiety. My doctor wasnt that interested when I went to see him. When I was 30, I finally asked the doctor to put me on anti-depressants as I was sick of feeling low all the time. I wish I hadnt as I think I've suffered long term damage to my mind from taking Prozac.
I kept telling my doctor that there was something underlying that was causing my anxiety and depression but they waved me off as being silly until finally they relented and referred me to a specialist. I was sent to a psychiatrist who pretty much agreed that I showed all the signs of Aspergers but referred me on to an AS specialist for diagnosis. I finally got to see her nearly a year later and was officially diagnosed.

I hate this curse. Others see it as a gift but I don't.

 

[nyxjord]

When I was 23 I started researching ASD and found many things that I could relate to. However, I was in denial that I could have it because I didn't fit the stereotype and didn't feel comfortable with the negative connotation that the public has. So I forgot about it for a year.. but the issue just kept bubbling back up and eventually I decided I would make an appointment-- just to put my mind at ease, either way. So I made an appointment (and didn't have insurance so I paid based on a sliding scale of my income) and met with the specialist. I brought all the information from my childhood that I could (self reports and then also my file from DCFS from when I was in the system). I also told her about my experiences as a teenager and then now as an adult. I told her things I had never before told anyone... and reported as much as I could, so that she could have the best picture. I went three times over a few months (and only had verbal interviews-- no tests or anything like that). After our last meeting, she took everything I had brought/told her and decided whether what she had observed and learned was what she knew to be indicative of an individual on the spectrum. In my case, I did receive a diagnosis. Once I did, I was in shock (because again, I was a bit in denial about what the reality of what ASD is) and I kind of forgot about it for a while. Then it came back and I worked through accepting it. It wasn't that I now had cancer or something-- it was just that I had this thing that the public so despises and fears-- that was really what scared me. Eventually though I became comfortable with this name for what was different about me.

ETA: In my case, I did not seek a diagnosis for accommodations-- I sought one to put my mind at ease that I wasn't being a hypochondriac (which is rampant in my family) and for the validation that someone who has worked with individuals on the spectrum for many many years, could give to me. I couldn't do that for myself.

 

[Kit]

I got diagnosed at age 12 because I needed a diagnoses for school. Apparently none of the other labels weren't good enough and couldn't give me the right education.

 

[donn]

I haven't secured an official diagnosis as yet, but it was recommended by a psychiatrist, whom I met outside of his job, that I go in for testing. I dismissed the idea, as I didn't want to be part of a trend of people that I had observed looking for an excuse to flaunt poor social skills. Since discovering that I match various other criteria that don't get bandied about in the media, I am likely to pursue a diagnosis. This will be in order to get a better understanding of how fundamentally I differ from NT's, improving on my patterns where I didn't notice a deficit before and establishing limits on how far I'll try to push myself outside of my comfort zone.

Given that I've associated many of my struggles with being an overly intellectual middle child, I'm hopeful that sorting out some questions of nature vs nurture will be a great relief and will provide keys to further progress. Frankly, an official diagnosis would do a great deal to ease tensions between myself and one of my parents, who has a great respect for the voice of authority and somewhat less respect for my social preferences.

 

[Mira]

I was diagnosed around high school by my psychiatrist. I had been seeing a therapist for years because of depression. I had made a lot of progress but he thought that I might be able to do better with medication. I started seeing a psychiatrist to prescribe meds and monitor my progress. I lucked out in that the psychiatrist I went to happened to be one of the leading experts in the state on Asperger's. This was over fifteen years ago so even a lot of medical professionals weren't very familiar with it at the time. He recognized my symptoms and has been working with me ever since. I would suggest seeing a doctor to get diagnosed. A lot more of them are familiar with the condition now and if the problem is related to something else they would be the ones to figure it out.

 

[Bruce Stern]

I received a formal diagnosis this week and still processing how I feel about it.

I have no idea how 'fixable' this is but I was referred to a coach I'll start working with who specializes in ASD/communication skills. Personally I don't feel social skills will come easy but I can't play the violin worth a crap either because I've never had good instruction or practice. *wink* I've had my own ways of dealing with communication barriers which haven't worked out so well but that's part of this condition. My grandmother said "The best place to pray for potatoes is at the end of a hoe". I think the worst thing would be to do nothing. Because like it or not, I will be stuck with this no matter where I move or what job I take.

One of the biggest revelations has been learning that many eccentricities/quirks are part of this condition. There's some arenas (like blunt honesty, body language, perseveration on topics, ability to chit-chat) can be improved. I don't think it has to mean a fundamental change in who I am, if anything I'm going to more correctly communicate what I want rather than create unintentional enemies. I'm already practicing things like better eye contact, smiling, etc although I'm terrible at judging people's responses unless they're very obvious.

 

[artfull dodger]

I was seeing a therapist as my marriage was in real trouble. I was seeing her in both a group setting and one on one. I was having difficulty with understanding and applying what she was trying to teach me to help my relationship with my wife. It was after she stepped back and looked at my issues as a whole, they she brought up the possiblity of Aspergers. The following week she had me take several tests and we discussed my childhood and school years in more depth. It was at that point she diagnosed me with AS. Although she doesn't believe in a "mild" ect tag to the Dx, I do range from mild to severe depending on the situation and where I am in the process of being overwhelmed at that time. I didn't take the online tests till after her Dx. A second assessment, this time by a someone with a Phd confirmed the initial Dx. While I have never been hospitalized, I probably should have been a couple of times as a teen when I attemped suicide. But I was almost a ghost to my parents, spending most all hours at home in my room with my trains. Mike

 

[Myway]

A psychiatrist. I was diagnosed because of my inability to socialize appropriately and because of my sensory problems.

 

[SoylentHuman]

I was diagnosed with AS when I was ten. I remember my mother taking me to a children's hospital, where I talked to a couple of doctors and played a simple game on the computer to test my reaction time. After that, everyone was like "Yeah, he has Asperger's Syndrome" and that was about it. I think I was suspected of being on the spectrum beforehand, but this was when I got an official diagnosis.

 

[Jacoby]

I was like 15 or so, social and educational failure pretty much. I remember the doctors name, he's pretty well known locally for the multiple deployments he took overseas to serve our troops in Iraq and Afghanistan.

 

[unsurewhattoname]

Very narrowly missed being put on a psych ward (involuntary) which started the diagnostic process and I got diagnosed by a psychologist.

 

[Rosebud975]

It's only been up until recently that I've been diagnosed and I've always been a bit different. I've always suffered or acted 'awkward' in social situations and throughout my life, have struggled to speak or interact with individuals I don't know. I've suffered from intense panic attacks and extreme anxiety to the point of experiencing symptoms of psychosis. throughout my life, I've struggled with depression and I also have poor coordination skills and struggle to preform the easiest of tasks as well as compete in sports. It was only recently I was diagnosed with aspergers amongst other disorders by a psychiatric professor and subsequently given medication. I'm also waiting to undergo therapy and since the diagnosis, I am a lot happier and feel like I'm making progress slowly but surely!

 

[Misfate]

For me there were three stages:
1. Unofficial diagnosis from my old psychiatrist
2. Self-diagnosis
3. Official diagnosis after a series of tests.
Now I don't recall much about the first, but the self-diagnosis and official diagnosis were based on traits of isolation, selective socialization, quirky/repetitive activities, and elongated writing/speech w/ notable vocabulary.

 

[shinkansen]

Who diagnosed you ?
Two specialist doctors at the autism spectrum disorder (ASD) unit, at a London hospital, UK.

Why ?
A specialist doctor who diagnosed me with ADHD also suspected a co-morbid ASD diagnosis. He referred me for an ASD assessment, which took place at the same hospital.

From my ASD report, it seems they diagnosed me for 3 reasons:

• Lack of empathy. They used an 0-80 EQ score. 30/80 or below triggers possible ASD. I scored 16/80
• Reciprocal Social Interaction. They use a 0-6 score. 4 and above triggers possible ASD. I scored 5/6
• The report makes frequently reference to routines and special interests.

Both the ADHD and ASD assessments and diagnoses were done by the UK's NHS (National Health Service). This is the UK's universal health care service, which is free at the point of use and funded by general taxation. I've been pleased with the NHS service and the support I've had from my NHS GP. All my ADHD and ASD appointments and meetings took place over a 14 month period.