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What to except when being diagnosed with Autism

Christina Renee

Dreamweaver
Hey guys
I am 27 and I have always been different and perceived the world in a way that was not neurotypical. I have been reading a lot lately about High Functioning Autism and Aspergers and it seems like every page I find myself going "oh that's me" or "wow so that's why I do that" and so on. I truly believe that I am on the spectrum but I have a lot of anxiety about being diagnosis... for one it involves face to face talking with a stranger. I am pretty good with talking about topics but I am not good at talking about myself.
I am in the USA (Indiana more specifically) and I am not sure what my first step would really be to get a diagnosis. More importantly I have no idea what to expect which is the main reason why I haven't done it yet.
Can you guys help me out? What type of questions or tests do they give you? It freaks me out that I could quite possibly be taking the most important test of my life and I have no idea what to expect.
 
I'm not US-based, but I can tell you this: there's no need to worry about the tests in assessment. There are no right or wrong answers.
In my case, assessment consisted of a number of tests I had to take over the course of eight hours or so (but not necessarily on the same day, haha), a few hour-long sessions with a psychologist specialized in ASD, and the psychologist interviewed my mom for an hour about what her pregnancy was like, how I developed as a toddler, what I was like as a child, teenager and adult.
 
You might research Social Security, it is my understanding that they recognize ASD in children but not in adults unless you can prove that the disability prevents you from working.
 
Hey guys
I am 27 and I have always been different and perceived the world in a way that was not neurotypical. I have been reading a lot lately about High Functioning Autism and Aspergers and it seems like every page I find myself going "oh that's me" or "wow so that's why I do that" and so on. I truly believe that I am on the spectrum but I have a lot of anxiety about being diagnosis... for one it involves face to face talking with a stranger. I am pretty good with talking about topics but I am not good at talking about myself.
I am in the USA (Indiana more specifically) and I am not sure what my first step would really be to get a diagnosis. More importantly I have no idea what to expect which is the main reason why I haven't done it yet.
Can you guys help me out? What type of questions or tests do they give you? It freaks me out that I could quite possibly be taking the most important test of my life and I have no idea what to expect.

Our two young sons were not adults when they were tested, so their testing differed, but from my understanding for adults, a psychologist could test for Autism Spectrum Disorder using questionnaires and observations to compare that against the DSM-5 for Autism Spectrum Disorder. So, if you looked up the DSM-5 Diagnostic Criteria for Autism Spectrum Disorder, you will get an idea of what that clinician will be looking for in his observations and when analyzing your answers during the meeting(s). Other doctors may evaluate differently though.
 
Hey guys
I am 27 and I have always been different and perceived the world in a way that was not neurotypical. I have been reading a lot lately about High Functioning Autism and Aspergers and it seems like every page I find myself going "oh that's me" or "wow so that's why I do that" and so on. I truly believe that I am on the spectrum but I have a lot of anxiety about being diagnosis... for one it involves face to face talking with a stranger. I am pretty good with talking about topics but I am not good at talking about myself.
I am in the USA (Indiana more specifically) and I am not sure what my first step would really be to get a diagnosis. More importantly I have no idea what to expect which is the main reason why I haven't done it yet.
Can you guys help me out? What type of questions or tests do they give you? It freaks me out that I could quite possibly be taking the most important test of my life and I have no idea what to expect.
It really depends on where you go for the diagnosis. For example, there is an LCSW near me who asked for friends/family who had known me for years so that she could interview them and then was going to interview me for several hours - she wasn't going to conduct any tests. Then, there is a cognitive clinic not terribly far where psychologists would perform all kinds of real diagnostic tests. Not sure what other options there might be. I decided not to seek diagnosis for myself, but that's what I learned from looking into it.
 
You might research Social Security, it is my understanding that they recognize ASD in children but not in adults unless you can prove that the disability prevents you from working.

Keigan, we are unsure if the original poster even was pursuing a formal diagnosis to get social security disability benefits, or if she just wanted a diagnosis for formality reasons or to understand what condition she had. If the desire was for possible disability benefits in the future, I needed to clarify something you said.

The Social Security Administration in the US has no choice but to recognize ASD in any child or adult that has medical proof of that diagnosed condition. They are not a medical agency to determine if an adult or child has that condition, but to determine if that medically diagnosed condition(s) is severe enough to constitute a disability according to their law.

If you meant that a child with ASD is evaluated differently than an adult with ASD by the SSA, in terms of what qualifies as a disability under their law, you are correct. For adults with ASD, one has to prove their disability has lasted for a year in duration or will last a year in duration, in terms of that claimant not being substantially gainfully employed.

For children with ASD, employment is not to be considered obviously, unless they are a teen working perhaps, and then that could be a factor. In order to prove a child's disability, one just has to show that medical diagnosis on the SSA's list of childhood impairments is such their limitations and delays are marked to significantly more than their peers, and that their milestones not met in comparison to children their same age.
 
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In Australia i approached a clinical psyc with experience in ASD and was offered the choice of an interview where my answers would be analysed or to go through the diagnostic criteria and discuss how that related to me. It took about 3 hour long sessions to complete.
It's nerve wracking at times despite there being no wrong answer ... because at times i felt unable to adequately express myself and keep up appearances. I always had thoughts after of what i should have said or added.
It might be useful to you if you look up the DSM criteria and list what you think applies in your circumstances so you can have a starting point of discussion. Better than what i did ... blabbered like a twit about something or other feeling i was on the spectrum but if she doesn't think i am then that's ok... :eek::confused::mad::(
 
good questions but depends on what you are expecting as a result of diagnosis. i freaked out for a while since i was not expecting it and was seeking help for anxiety. pretty much blew me away.

if you are expecting it, then your reaction would be different.

bottom line, if you are having difficulty, then a diagnosis is a starting point to work from to find some resolution and path to peace.
 
Hey guys
I am 27 and I have always been different and perceived the world in a way that was not neurotypical. I have been reading a lot lately about High Functioning Autism and Aspergers and it seems like every page I find myself going "oh that's me" or "wow so that's why I do that" and so on. I truly believe that I am on the spectrum but I have a lot of anxiety about being diagnosis... for one it involves face to face talking with a stranger. I am pretty good with talking about topics but I am not good at talking about myself.
I am in the USA (Indiana more specifically) and I am not sure what my first step would really be to get a diagnosis. More importantly I have no idea what to expect which is the main reason why I haven't done it yet.
Can you guys help me out? What type of questions or tests do they give you? It freaks me out that I could quite possibly be taking the most important test of my life and I have no idea what to expect.

From personal experience alone, I went to a psychologist a couple of months ago because I'm struggling with so many things in life - anxieties, social and emotional issues, immaturity, the inability to let go, self-hatred, meltdowns, tantrums...I've never been able to handle them on my own. I used to just sweep it all under the rug and hope that it'd magically go away someday - that was a big no-no, of course - who was I kidding? It took me nearly 30 years to finally see a professional. We started dealing with anxieties first because they're just THAT bad and they just strain my relationships with my parents and coworkers, and so he suggested to use a method to manage them - a method that doesn't take mastering overnight, but so far it worked for some types of intrusive thoughts (see Managing Anxieties - the FLOAT Method)

So, the doc has been noticing my behavior during our sessions and also took into account the answers I provided to some general questions he's asked. Right before the 3rd session he asked me to take a 50-question AQ (Autism Spectrum Quotient) test, not sure if you've heard of it yet. I scored 31 (33 when I retook it) out of 50 (because it turns out I have a small number of NT qualities, for instance I enjoy being hugged but that's purely because it's a sign of people CARING about me enough to invade my personal space lol; I'm also not fascinated by dates, but I have been fascinated by certain types of integers). These scores are enough to indicate an extreme likelihood of Asperger's at least by this test alone.

I personally don't consider the test all that accurate because I feel like my Asperger's is more advanced than the score represents, but I do take it as a general approximation. There are other more detailed tests one can take online, but the doc only made me take this one. Based on my score the doc told me that I'm very likely to have Asperger's. He told me that a formal diagnosis is not needed; I fit the Aspie profile and he wants to help me manage it regardless. Anxieties are common with Asperger's so we started with those. I actually don't think a diagnosis is required therefore I agree with him on that aspect, because we have enough evidence to conclude that I DO have Asperger's based on our sessions. For a diagnosis I'd need to go see a specialist and I don't think it's crucial.

We're also working on social skills and mannerisms. There's so much more to cover and there are going to be tons more sessions. So far it looks promising. He recommended that I join an online community for Asperger's, and so...here I am. I should have gone to see a doc sooner and I should have joined AC sooner. Years sooner. I love it here, I feel so much at home - so many people I have so much in common with, and my lengthy posts alone are evidence of just how much I can relate.

So get a diagnosis if you feel like you need one, they're not gonna worry about eye contact - but I do know from personal experience that it's perfectly fine to manage Asperger's with the help of a psychologist without being formally diagnosed. I'm managing it because I want to be able to cope better in the NT world. My journey has only just started.
 
If you have a lot of anxiety about face to face interactions you could write your issues down. That might help.
 
I am in the US and am scheduled for my eval on Sept 9th. I was told to expect a long day, at least 8 hours, of testing. I am retired and recieve Medicare. As I understand it, medicare only pays for an evaluation. With regard to face to face discussions based on questions that pertain directly to you: be honest and speak from your heart. If you need to cry, don't be ashamed to let your emotions flow from your deepest being. No one will condemn you. You will be in a Safe space with Safe people.
I've spent my whole life hiding my sensitivity from myself and others. I didn't want to be made fun of or ridiculed for being a cry baby. The result of this caused others to consider me to be aloof and insensitive. It also caused me to bottle up so many emotions that I became a walking meltdown waiting to implode.
We here have been created as we are for a special purpose. Testing may help you better understand your gift.
I wish you great strength, answers and true results in your evaluation.
 
In Australia i approached a clinical psyc with experience in ASD and was offered the choice of an interview where my answers would be analysed or to go through the diagnostic criteria and discuss how that related to me. It took about 3 hour long sessions to complete.
It's nerve wracking at times despite there being no wrong answer ... because at times i felt unable to adequately express myself and keep up appearances. I always had thoughts after of what i should have said or added.
It might be useful to you if you look up the DSM criteria and list what you think applies in your circumstances so you can have a starting point of discussion. Better than what i did ... blabbered like a twit about something or other feeling i was on the spectrum but if she doesn't think i am then that's ok... :eek::confused::mad::(


I think the blabbering actually helps get diagnosed. Blabbering is what aspies do. I blabbered, cried during painful moments, went on rabbit trails when answering questions, and behaved in all my aspie ways. This is the time to be our truest selves.
:)
 
Honestly, there's not much benefit to seeking an actual diagnosis and I don't know that I'd recommend it. My experience was pretty invalidating all in all; most psychologists, if they recognize autism, only do so in extreme cases or in children. I was in therapy for PTSD after my roommate committed suicide, and when I mentioned that an aspie friend thought I was on the spectrum, the first person I was meeting with said that didn't fit because I "seemed to care about people." Huge misconception about ASD, but even psychologists believe it. Then I was seeing a different psychologist and I was lucky in that she had worked extensively with young adults on the spectrum, including females (it presents differently in girls than in boys); she worked with me all summer on the trauma, and we went through the DSM criteria for Aspergers (this was before the DSM-5), and she basically said that yes I have it, but she knew it was changing in the DSM-5 and didn't know yet what it would be. She also said that throughout the summer I'd learned so many coping mechanisms that the symptoms that were present might not be easy enough to detect for a diagnosis, and that she didn't recommend an official diagnosis for me because I wanted to go into medical school and it might affect my ability to get licensed.

I'm a very mild case, but I'm also more and more confident it fits as time passes and I learn more coping mechanisms and learn more about the disorder. Later psychologists (I've seen several because of location changes) have said it was possible I was on the spectrum but that I'm so high functioning they wouldn't have picked up on it, or that it only shows in certain contexts. Honestly though, in social settings it DOES get noticed - friends on the spectrum have asked if I was because of behaviors that stood out, friends who knew me when I was informally diagnosed said they'd wondered why I hadn't been evaluated years prior, and I've learned to recognize things where ASD makes so much more sense.

My point is, if you've made it to adulthood without diagnosis, it would probably take a special psychologist to recognize it in you. Some will think that caring about other people, or doing well in school, or being able to maintain a job, or having had relationships, means it doesn't fit you - when what they should be looking at is HOW you go about all those things. When I figured out I was on the spectrum, a LOT changed; I understood why things were happening, and was able to change them. Understanding my challenges has helped me to use them to my advantage. That, and the fact that the woman who was confident had I was on the spectrum was the only psychologist I'd worked with who had experience with young adult females with ASD, makes me pretty sure of my diagnosis. But it's informal, so that if I ever seek a security clearance or medical licensing etc I won't face the stereotypes that are so common.

If you would be okay if someone told you that the fact that you were able to call and make an appointment with them means you're too socially capable to have ASD, or that you're too capable of conversation (even though therapy doesn't require timing or interaction, just monologue) etc then you can try. They may give you some clinical tests (you can find the Autism Quotient online, that's a common screening), will probably take many sessions to get to know you enough to feel they can evaluate, may want to talk to a parent about early childhood. But if you can trust your own judgment and don't need the formal diagnosis, then I recommend reading up on it instead. See what fits you, what techniques worked for other people, how you can better understand yourself. For me, everyone who discarded the idea because of stereotypes that aren't necessarily true was very invalidating and very hard to hear. I could have handled much more easily someone saying they didn't feel it fit me for other reasons, but misconceptions that I knew from my research were misinformed really bothered me. It's hard to trust someone to help you if they don't seem to know what they're talking about.

Good luck!
 
Hey guys
I am 27 and I have always been different and perceived the world in a way that was not neurotypical. I have been reading a lot lately about High Functioning Autism and Aspergers and it seems like every page I find myself going "oh that's me" or "wow so that's why I do that" and so on. I truly believe that I am on the spectrum but I have a lot of anxiety about being diagnosis... for one it involves face to face talking with a stranger. I am pretty good with talking about topics but I am not good at talking about myself.
I am in the USA (Indiana more specifically) and I am not sure what my first step would really be to get a diagnosis. More importantly I have no idea what to expect which is the main reason why I haven't done it yet.
Can you guys help me out? What type of questions or tests do they give you? It freaks me out that I could quite possibly be taking the most important test of my life and I have no idea what to expect.

Hi Christina Renee. Welcome to AC. I have not been officially diagnosed and I am not sure that I want to be either. A lot of practitioners do not know that much about Aspergers in adult women. This can mean you could have some less pleasant experiences with them.

My go to method for dealing with a lot of problems is to get on the internet and start researching. There are lots of tests available online for free to help you find out for your own information whether you have Aspergers. You can also read online and here about what it is like to have Aspergers.

Once you satisfy yourself whether you have Aspergers or not, you could think about it and decide whether a diagnosis would be beneficial to you or not. People going into the medical profession on here seem to agree that for them, an official diagnosis is a bad idea. There are other professions where this would also be true.

I do not have one of those professions, but I still do not think I necessarily want the diagnosis. It is possible to find a friendly practitioner who will be frank about the pluses and negatives of an official diagnosis for your own situation. I think that this might be helpful for you. Some of it will depend on what your resources are to find such a practitioner.

If I do decide to seek a diagnosis, I will probably look for a licensed clinical social worker. They are cheaper than a psychologist or psychiatrist and easier for me to get along with. I am opinionated and often stubborn and often better informed than any of the aforementioned. It can give me a dim view of the aforementioned they seem too stupid or incompetent to me, and I am not good at hiding this. It does not bode well for the relationship if it turns out like that.

I read that itis believed that at least 70% of Aspies have an above average IQ, so may run across the same problem. Licensed Clinical Social Workers seem to be more relaxed and easy to get along with for me. I have other reasons for preferring them, that I don't want to talk about right now.

What I have said may or may not apply to you, but here is my two cents worth for you to consider.
 
i don't have a direct answer to this, but only some insight as I am 1) a NT, 2) an attorney, 3) dating someone with AS. I am very close to positive that my boyfriend has AS, but I have found no real need for him to get a professional diagnosis as there is no "cure" (not that one is necessary), and his "symptoms" (anxiety, depression, etc) are pretty much in check. The only thing I've looked into are therapists who specialize in AS so that they can provide some helpful hints and tips for dealing with any difficulties he/we may face. However, there is a real concern in an ever changing health care system that having something as a "pre-existing condition" may be harmful when obtaining health care in the future. I would still highly recommend getting a diagnosis if you think there are ways in which a diagnosis would help you (covering psychiatrist, LCSW, providing other benefits), but unfortunately, having something in your medical record with no expectation of any assistance can almost be harmful. I am NO EXPERT, and there may very well be great reasons anyone would desire a formal diagnosis - but this has been my thought process around the topic. I'd be more than interested in anyone's response that would push me in one way or the other!
 
However, there is a real concern in an ever changing health care system that having something as a "pre-existing condition" may be harmful when obtaining health care in the future.

Point well taken. The healthcare system in this country (if one wants to actually call it that) is in an open debate at the highest levels (below the courts). Throw in the present political polarization and there's really no way to tell where it's all going.

Not an optimal time IMO to officially document one's autism and comorbid conditions.
 
i don't have a direct answer to this, but only some insight as I am 1) a NT, 2) an attorney, 3) dating someone with AS. I am very close to positive that my boyfriend has AS, but I have found no real need for him to get a professional diagnosis as there is no "cure" (not that one is necessary), and his "symptoms" (anxiety, depression, etc) are pretty much in check. The only thing I've looked into are therapists who specialize in AS so that they can provide some helpful hints and tips for dealing with any difficulties he/we may face. However, there is a real concern in an ever changing health care system that having something as a "pre-existing condition" may be harmful when obtaining health care in the future. I would still highly recommend getting a diagnosis if you think there are ways in which a diagnosis would help you (covering psychiatrist, LCSW, providing other benefits), but unfortunately, having something in your medical record with no expectation of any assistance can almost be harmful. I am NO EXPERT, and there may very well be great reasons anyone would desire a formal diagnosis - but this has been my thought process around the topic. I'd be more than interested in anyone's response that would push me in one way or the other!

Hi Brittany. If there is no urgent need for a diagnosis, I would say no. This is partly because psychs have too much power over people with an official diagnosis now. They can do stuff like sending a police officer to make sure you take medicine u do not want and send u to a psych unit temporarily, and get that extended and other nasty stuff u might not like.
 
i don't have a direct answer to this, but only some insight as I am 1) a NT, 2) an attorney, 3) dating someone with AS. I am very close to positive that my boyfriend has AS, but I have found no real need for him to get a professional diagnosis as there is no "cure" (not that one is necessary), and his "symptoms" (anxiety, depression, etc) are pretty much in check. The only thing I've looked into are therapists who specialize in AS so that they can provide some helpful hints and tips for dealing with any difficulties he/we may face. However, there is a real concern in an ever changing health care system that having something as a "pre-existing condition" may be harmful when obtaining health care in the future. I would still highly recommend getting a diagnosis if you think there are ways in which a diagnosis would help you (covering psychiatrist, LCSW, providing other benefits), but unfortunately, having something in your medical record with no expectation of any assistance can almost be harmful. I am NO EXPERT, and there may very well be great reasons anyone would desire a formal diagnosis - but this has been my thought process around the topic. I'd be more than interested in anyone's response that would push me in one way or the other!

For those who are very high functioning and do not expect to need many medical treatment services, or to need any school or employment accommodations, and who have stable employment or wish to have a professional career, then it seems like there would be more risks or less need to getting a formal diagnosis.

But, for those who have varying medical treatment needs, and that could only be covered by their insurance with a formal diagnosis, and who need certain accommodations, or who do not work, or who expect to apply eventually for disability benefits, a formal diagnosis may provide more benefit, provide less risk, or more comfort.

It all is a personal choice though depending upon other factors as well, like family related issues, a sense of identity, or for those who hate to be stereotyped.
 
Well, you either are on The Spectrum or you're not.
Go and get tested. You don't need to know what to expect. Just be yourself and if you truely are on The Spectrum, it'll come out. If you're not, that'll come out too but knowing what the tests are beforehand and knowing what to expect could affect the test results through influencing your behaviour.

I dislike it when people get on these forums asking for "acting lessons" on "What should I say?", "What should I do?", "How should I act?" If you need to be told how to act to be diagnosed as an Aspie, then you're not really an Aspie. If you're REALLY an Aspie, then just be yourself and it'll be detected!

Just go in there, let the professionals do what they know how to do best, try to relax and BE YOURSELF! If it's meant to be, it will be!
 

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