What does an official diagnosis mean?

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Does it just mean the doctor confirming it or will they give you a piece of paper with your name on it?

Just them writing a few pages on you about your diagnoses they have given you and your difficulties.

It means that someone with the proper medical training recognizes that you're autistic.

Usually, it goes in your medical record, and if you have that clinic share your records with other clinics, then your other doctors will have access to your diagnosis and the doctor's thoughts on it.

If they did an evaluation (tests and things), it's a good idea to ask for a copy of the report so you can look at the test results at home, and maybe see if you have any dramatic strengths or weaknesses you should be aware of. If you get a "piece of paper", it'd probably be a neuropsych evaluation report. But some diagnoses are done by interview only, without neuropsych testing, so there's no guarantee there.

If you need them to write a letter to, say, your school whatever, about your diagnosis and its implications, they can do that. It's usually a part of getting educational accommodations, and not too big a hassle.

Last edited by Callista on 05 Aug 2011, 2:14 am, edited 1 time in total.

Not a whole lot if you live in America, that's for sure.

Once I stubbed my toe, and it turned blue and black. I went to the doctor and he just looked at my toe, and then said - "yes, you have broken the bone in your toe".

That was all. No X-ray, no tests, no printed paper with a diagnosis on it. He just gave me some advice - tape the toe to the next toe for 4 weeks - and that was that.

That's all a diagnosis is, most of the time. The doctor or psychologist tell you what they think you have. They may write it down if they think you need to give the diagnosis, or a more complete report, to someone else (a school, a medical insurance company, etc).

I don't need to give anyone a written statement that I have AS. I can tell people informally, if I wish to, but I am not applying for any assistance, other than seeing the psychologist himself - and he already knows what he diagnosed me with.

It is not like you dress up in a robe, stand before a crowd of cheering friends, and get given a big roll of paper saying "Congratulations! You have AS." That's called graduation, not diagnosis. But maybe they should do that. It might help, sometimes.

When my daughter was diagnosed the neurologist just told us she had AS (she was confirming my kid's therapist none-professional diagnosis, and my daughter was on therapy already). The neurologist did not give us anything written. My daughter was having problems at school by then, and the school requested the diagnosis, so we had to go back to the neurologist to get it written, so I think it would be a good idea to request the piece of paper. You might need it, so getting it will save you some time.

I like that idea

I got a copy of a report covering what happened in the interview

In the US it also means that you are uninsurable for private individual health insurance. It will be used against you if you are ever accused of a serious crime. It could be used to deny you a career in the military, law enforcement, nuclear power, or national security, It could used against you if you ever have child custody disputes with your own children or tried to become a foster parent or adopt. Forget about being an egg or sperm donor. And most doctors you see for the rest of your life will pre-judge you before they even examine you and write off any of your complaints as just an autism/asperger thing.

Not trying to discourage anyone from getting a diagnosis, but these are things you should be prepared for.

Is it compulsory for people in the US to reveal that they have AS for things like health insurance? I'm pretty sure that, if I'd get the diagnosis, I would not have to reveal it to anyone or any institution that I would not want to reveal it to.

Wow. This scenario looks very depressing. Unfortunately it all sound possible (I do not live in US so I wouldn't know for sure). About the doctors pre-judging you, I am sorry but I kind of understand them. My Aspie daughter and husband are both hypochondriac. My husband more than my daughter. Every time I get sick (thank God that's not very often) he immediately says he is starting to feel sick, too. And if he has anything he immediately think about the worst case-scenario possible, including cancer. It is very difficult, and very dangerous, because I have to double and triple check before taking my kid to the doctor because she tends to exaggerate (or create) symptoms.

Services!

It can mean being granted access to services. That was the first thought that came to my mind at this topic's title.


I received a detailed written report of all testing done and that the process pointed to that I have autism.

My report also included 1. a list of all conditions that could be mistaken for autism, explaining that they were dismissed (and why), 2. the results of my IQ testing to see how it correlates to autism or might affect it, 3. as well as a short summary of some of my symptoms and abilities that became apparent during the testing and 4. might be relevant for treatment of my autism. There might have been something else, but I forgot.


This report was the prerequisite for my ASD-specific treatment. It was my sole reason to undergo the diagnostic process and receive an official diagnosis. I came to the same conclusion with my ADHD. I realised I needed access to treatment after all and in order to get it, I had to be diagnosed officially first.

I'm not a resident of the US, but my diagnoses also mean I can't get private insurance. It's not much of a problem where I live though. I also informed myself about other possible negatives consequences the diagnosis of autism might have for me. I felt it was a tough decision, until I figured that I likely wouldn't ever have a job, have kids or that I might get in trouble with law for autistic behaviour if I didn't get the diagnosis.

So, it wasn't that tough of a decision for eventually. Autism might get used against me in wrong, unfunded ways, but without the diagnosis I very likely wouldn't be doing any of the things I do now. I'd have missed out on a lot of great achievements.


Personally, I think a diagnosis is useful if you need access to treatment or services. If you don't need either, you might still desire a diagnosis to be certain that you have a known disorder and don't continue to feel like the world's only weirdo who's completely unlike the other almost-7 billion people.

To tell the truth, personally, I don't feel very certain about a diagnosis just because someone said so and I was sure I had autism and ADHD when I underwent testing. I know myself best, but I also realised the need to confirm my perception of my impairment and symptoms. My opinion is that there just isn't a guarantee that one is always right and always has an accurate perception that is untainted by emotions and lack of knowledge.

For me it would mean a slightly higher chance of maybe getting approved for SSI and being un-able to get health insurance even if I were able to afford it but have that 'pre-existing AS'.

I don't know. Validation? Knowing that I'm not one of those people who think they have AS simply because they have nerdy interests and some minor social awkwardness? My diagnosis hasn't meant jack so far when it comes to qualifying for SSI.

I was given a 10 page report on the testing done, results, and suggestions from him.

It's given me:
-An ability to work with counselors who specialize with ASDs, as they tend to not have room to accept self-diagnosed people
-An easier time getting accommodations that I need
-The ability to get help from a program that is for adults with aspergers in life skills if I end up needing it, and similarly, more information for Mass Rehab.
-A possibility of getting half price tickets for public transportation because I have a disability which prevents me from driving.


So really, it is about the services for me. After having it fail miserably to work with people who supposedly knew about the spectrum, because even when they knew that I was likely an aspie, they were treating me like a broken NT, I needed help from someone who could work with me rather than just telling me every detail about me was wrong.

Could you tell us a little more about that program for adults with Aspergers? A lot of people in this forum are having problems finding help for afults with AS. Thanks!

I'm not sure what there is for people in other locations but in Massachusetts there is the Asperger's Association of New England. I've not yet met with them formally - only gone to a conference on Adult AS, but they want me to meet with them and go over what is available for me that they know of. They also run LifeMAP, which is for helping adults with learning how to deal with day-to-day stuff. The person who diagnosed me recommended I look at that program. At the moment, I'm first going to be working with a counselor and see whether after I'm finally seeing a counselor whether it'd help me to go through a more specific program.


I assume that there are ASD groups elseware, I just don't know what is available - I only know what's available for me.

However, even just having the state thing for helping people with disabilities find employment that matches them working with me and needing some official diagnosis is huge - I had signed up with them only on migraines (they considered it enough because it limits the environment I can work in - though the migraines are connected to my AS), but the AS diagnosis they've said will help immensely with helping me find a job.