Getting diagnosed as an adult... advice appreciated!

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I'm quite sure I'm on the autism spectrum, but I've decided that I want to seek a professional opinion. The main reason for this is my difficulty in communication with my parents (whom I live with), which is complicating various aspects of my life. Since learning about ASD less than a year ago, it has helped me understand myself and the communication difficulties (and sensory issues) that have plagued my whole life. Even though it's a bit late, I really want to have a good relationship with my parents and have tried to explain about ASD and how it could help explain my issues and promote understanding. Unfortunately I'm not good at explaining that to them either, and they don't seem to believe me or take me seriously, despite my best efforts. Perhaps if I can get a professional diagnosis they will listen and try to accept and understand. This is certainly not the only area of life affected by my autistic traits, though my childhood trained me into a master at masking and holding off meltdowns & stims until in private. Although I graduated college (I thank God for this), I suffered extreme stress without help I wish I had had, and this has partially discouraged me from pursuing grad school. Although I have a job which brings me fulfillment (again I thank God for this), it is extremely draining and I am afraid of burning out. However, even if I got a diagnosis, I don't know if I would ever have the courage to disclose to anyone at work. What I really want though is for my family to be more understanding and supportive to help me succeed in my work, instead of being an additional set of stressful interactions to navigate when I get home. I know that's a lot to expect, maybe too much.

So now I have been contacting different offices in my area that do evaluations for adults to find out about the process. Two of the offices (which I found through Google) have the same basic process: 1) bring paperwork in and have an initial interview, 2) come in for a 6-hour testing session, and 3) come back after 3-4 weeks for a feedback session to receive & discuss the official diagnosis write-up. The cost is in the $2,000-$3,000 range.

The other possibility is a psychologist who was recommended to me as someone with experience diagnosing adult females. I emailed her some questions about the evaluation process, but she set up a phone call to ask me about myself and why I was looking into a diagnosis before explaining the process. Based on my answer (communication with parents as main reason and I've finished college and have a job), she recommended this: 1) Fill out history and self-report paperwork and send to her and 2) meet with her for 2-hour interview, by which time she would tell me (and my parents if I want them there) whether ASD is an accurate description for my brain style. The cost would be $300 for the 2-hour interview.

I'm leaning toward the last option, but my questions for you are:

1) If you have been diagnosed as an adult, did your process look like either of these?

2) If you your process looked like the first two offices, was it worth the money to have an official document? What education/employment accommodations or services has it made possible for you?

3) If it looked like the last one (interview with a specialist but no official written diagnosis), has that been satisfactory for you or did you later on wish you had an official document you could use for education/employment/etc accommodations?

Thank you so much for sharing any experiences or advice!

I was remitted by a doctor and had 2 interviews and they interviewed my parents as well, and there were tests (like WAIS and storytelling/pattern identification and a reaction test), the latter probably to get a differential diagnosis from ADHD or similar.

I live in Sweden btw, so i don't pay.

1) No. I was diagnosed with ASD incidentally while under treatment for PTSD.
2) No. At 59, it was somewhat informative and explanatory, but useless as tits on a boar hog.
3) N/A

From personal experience and being here a long time.

Some people "get" autism and it doesn't matter whether you have an actual diagnoses or not.

Most people find autism to be "hard" and never figure it out.

My mom got it because it is most likely she is on the spectrum.

I have a few really smart friends who got it.

The big issue is that autistics that your IQ in one area won't predict your IQ in another. Which is totally different than how people think. A normal female sees a really sharp dresser doing a clever combo and assumes she must be smart in other things. Maybe, maybe not if that female is autistic.

You should look for a job that provides a good work environment, even if it pays less or has less room for advancement. Advancement is a double edged sword for those of us on the spectrum.

Last edited by BTDT on 12 Jan 2019, 6:29 am, edited 1 time in total.

1. I'm in the UK and process 1 is close to what I experienced.

2. Diagnosis in the UK is free if you are willing to wait. I would of paid for it though. There is very little help for high functioning adult Aspies in the UK.

3. N/A

My diagnosis consisted of three 1 1/2 hour sessions with a PHD psychologist who specializes in autism . Additionally , there was a 1 hour session to explain the results . I recommend that you take the longer diagnosis , not the 2 hour evaluation and get the results in writing .
Getting the diagnosis was a life changing experience for me but don't expect others ( parents ) to understand . It's far more important for you to understand yourself than it is for others to understand you . Seeking validation from NT's is , for me , like doing the same thing over and over again expecting different results .

This ^

Hi Galadnarthiel,
I'm a woman (roughly twice your age) (now I feel old) and I was only assessed last spring, so I know what you're going through. I spent a lot of time researching where to go, as well. The waitlist for a free assessment was too long for my liking (over a year), but likewise I didn't want to pay for a faster assessment if it wasn't going to be done as thoroughly, or be as legitimate in its conclusions. I also wanted someone who understood ASD as it presents in females. That's another hurdle for you to consider because some professionals don't (male and female alike).

I ended up going through the Neuropsych. Department of my former university for suggestions. They were eager and interested because I also have PTSD and I've also had a stroke. They thought I'd provide excellent research material and be case study material. (Insert guinea pig). I was assessed by a woman who specialises in adult female ASD. For that I waited about three months, which was reasonable. She emailed me the Developmental Questionnaire before we met.

Prior to my meeting I spent the three months answering my questionnaire. I ended up writing a 188 page autobiography (seriously), with quotations, personal photos and school reports scanned into it, and I wrote a life summary with my categories and subtopics related to all the developmental questions. I even wrote out links to where she could watch some of my childhood home videos to see my mannerisms or dispositions in real time. There was an index so she could find certain answers or topics quickly. I had it professionally bound in two copies. One for me, one for her.

I know I kind of went overboard but she loved it (she also said the degree of detail and perfection was a red flag of autism on its own, lol). I sent it to her by courier about a month before our meeting so she would have time to read it all.

Our meeting was about twelve hours long even with the 188 page book received ahead of time.
I think I was there eight hours the first day and four or five hours the second day. There were lots of tests. I like questionnaires and tests, but I got so overwhelmed mentally from all the problem-solving and discussion of emotions that I nearly had a meltdown on the first day. I was absolutely knackered and could barely talk by the end. The second day was less intense. About a month later we met again for 2-3 hours so I could receive and review her feedback report. I was allowed to take it home and review it for a week in case there were any changes or errors in her factual information (there actually were little things I wanted revised, and minor typos, etc). I sent her my feedback and met her a final time to sign for my good draft of the report.

I absolutely 100% think you should go somewhere that gives you a comprehensive report. My report is about 25 pages with all the charts and graphs of where I rank in all the tests and categories. This is the only "proof" I have of autism. Otherwise I wouldn't be able to feel justified telling someone I have autism in the future. I can use it for support services, government benefits, tax deductions, accommodations if I ever go back to school or work, even to understand myself better. You can let your family read it if you feel so inclined, so they understand you better. In my case I didn't show anyone except for my ex-bf. (We are still friends). You don't have to let people read your whole report because that's very personal, but in my case I've photocopied the page that says "Isabella has autism and needs substantial support", along with her credentials and the date of the assessment.

The report itself is hidden away and no one needs to see it if I don't want them to. I allowed my assessment doctor to send a copy to my GP with a letter of explanation, so my GP has the full report but no one else, not even my PTSD Psychologist. If you don't get a report many people won't believe your diagnosis and there's a likelihood you'll start to doubt yourself over time too. I've seen that happen. People forget the details of their own assessment and start to think it wasn't legit somehow.

Another issue is that if the assessment isn't conducted by someone with proper credentials, you could be paying for an assessment that won't be considered valid to the government or to other doctors. Make sure your assessor has a PhD in Neuropsychology / Neuropsychiatry, etc., and isn't a Masters level student. Most regular GP doctors can't make the judgement call. Most regular Psychiatrists can't, either.

I wrote way too much. Sorry. I ramble. Let me know if you have any other questions. I know many resources for adult females on the spectrum if you are interested. Step 1: Google for Samantha Craft's female autism descriptors. It's a really good place to start at assessing yourself.

Bottom line to me: If you really want this assessment and it matters to you, do it right and seek the most qualified person you can find. I told myself "Go Big or Go Home". I didn't want to go through the process and have it deemed invalid in any way, so I sought the best I could find.

Welcome to the planet btw, as well.

1) I was diagnosed on two occasions, first through a psychologist in cognitive behavioral therapy (which I highly recommend if your autism traits are interfering with your ability to function), and then I received a confirmation of this diagnosis through a more traditional autism assessment, like your first option.

2) My family's insurance at the time covered the testing so that we only paid a fraction of the cost, but the value of the more thorough testing was very clear. Although any diagnosis (through a qualified doctor) will ensure that you receive accommodations, thorough testing is preferable for several reasons.

First of all, autism is a complex disorder, and a thorough assessment will often reveal autistic issues/traits that you weren't even aware of. Also, autistics often suffer from comorbid conditions like ADHD and learning disorders, which can be partially masked by autism (this is an interesting topic, but I won't go into it here). These will become apparent through cognitive testing but not through a purely interview-based assessment. If you've already made it through college, chances are you don't suffer from any, but if you're thinking about grad school it's worth considering.

3) Again, as long as the doctor who diagnosed you had a PhD, they can provide documents to ensure that you receive accommodations. I was offered one by the doctor who diagnosed me in CBT. It's just going to be less specific than a full psychological report would be. It would be "This person has ASD" versus "This person has ASD, as a result of which they have the following impairments." Because autism has so many different manifestations, this makes a detailed document more useful, but I'm pretty sure you'll have access to accommodations with any form of official diagnosis.

Having an official diagnosis ultimately helped me get my SSDI, even though they denied me once, I appealed and got it. Seems like it's typical protocol to be denied disability benefits once, always appeal.

Diagnosed at 34, seems like I was oblivious to my behavior and how people generally saw it. My mom was the one who found an article about asperger's and referred it to me. Too much in that article resonated with me, though I fought it for awhile; prayed on the matter and accepted what I had ultimately. This from one who managed to pray away one obvious ailment once, so I value prayer particularly when praying for others. I was indigent, so the folks had to help on treatment. Dad was less sure about my asperger's, he's ultimately had to accept it. I would say it's difficult on them both now and it's been fifteen years.

As far as your office choice goes, mine was probably more like the first. But I wouldn't necessarily discount the second option. The initial diagnosis was done by someone who apparently revered nationally for her study on it and she sold us on the fact that her recommendation would get me my SSDI.

Research, research, research. And trial and error. After the initial diagnosis, I had a therapist (in office from where I was diagnosed) who understood AS, but left for a job in California. They replaced her with a therapist who didn't have any AS experience. Not that he didn't try, but at the time I sure could've used one with AS experience. Then I stopped therapy and meds altogether. Then I moved somewhere else a few years later and found a decent therapist there but no earthshattering breakthrough. Then stopped. Then I moved somewhere else and found a therapist. Still no breakthrough. So since that point I've had therapists who weren't highly versed in AS, so if you can find one, consider that a good thing.

A book I recommend: The Complete Guide to Asperger's Syndrome-Tony Attwood

But then I recently tried an all-day adult partial patient approach once for two days and saw some positive movement to corral my anxiety and depression. The adult partial allows you to remain at home when not in the program; program could be anywhere from 6-8 hours a day and usually not on weekends. I'm back on meds again, even though I had to alter one med dosagewise and change another. For AS, I'm on I believe my fifth different med. I'm also back in an adult partial for awhile four days done so far, looking at five or six more days. One thing I could've done after the initial adult partial was to continue to review my notes I took every single day. And likely to alter my diet. So daily maintenance is key. Because I had a bit of a falloff after the first wave of adult partial, so I have to discipline myself when it comes to certain things. The adult partial might be a way to go after you're initially diagnosed, merely because an hour a week didn't work for me in retrospect though I didn't catch it at the time. Then maybe an hour a week afterwards with the right therapist.

I wish you the best on conquering this. You've got people who can relate to your situation on this board.

Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age
by Sarah Hendrickx

Women From Another Planet?: Our Lives in the Universe of Autism
by Jean Kearns Miller

These are two phenomenal resources for women on the spectrum. They are both on amazon.
((Thanks to RiversongK for suggesting them to me))

CRAFT

This ^ is Samantha Crafts's "Unofficial Checklist" for women. It's an excellent resource as well.

Please ensure you find an assessment doctor who specialises in women with ASD, because we present differently, and the testing questions should be designed accordingly.

Would it be possible to answer questions and do interviews by writing with a pen and paper instead of verbally, or do you need to talk?

Are you asking for yourself, Jessica? Or are you asking the OP?

I'm sure that you would be able to do many, many of the tests by pen but there were lots where I had a stopwatch and needed to say things:

Example:
Name all the boys' names you can in 30 seconds (or odd things like that for verbal skills)
Alternate between naming a type of furniture and a fruit (for 1 minute)
Look at this picture book with no words and tell me the story

I'm sure they must have a way to deal with people who are entirely mute though. I have severe selective mutism myself and I was comfortable enough in my assessment because it was just one woman. I was able to speak. I took my stimmies and literally sucked on them or sat on the floor when I was overwhelmed. I didn't hold back on my odd behaviours.

I booked my entire assessment via email because I don't do phone calls. Maybe you could do that? Just email various places asking if they will see someone who is totally mute?

Thanks for your reply. I was asking for myself, but others might have had the same question.

It’s good to hear that a lot of the tests can be done without having to speak. I think I would be okay with some of the spoken tests, as long as I could overcome my selective mutism enough first and it was only one person, like you had.

I’m glad you didn’t hold back on your behaviours. I think they would need to see things like that anyway because it could help them with the assessment.

It’s good that these types of things should only need to be done once, then they’re done.

Thank you so much to everyone for sharing your experiences, advice, and resources! This is incredibly helpful information as I consider my options and get more information from the offices. Also, it's very encouraging to learn I'm not the only one, so thank you for that reminder too.

^StarThrower Thanks for this reminder. I'm loyal to a fault when it comes to my family regardless of how they've treated me, but I'm slowly learning that my worth is not defined by whether they accept me, only by God's unconditional love for me.






^IsabellaLinton Thanks for taking the time to write such a detailed response. I am also a perfectionistic details person and now that I've decided to get a diagnosis, I want to do it right. I'm not sure about the other two options, but the psychologist I mentioned has experience with adult females and has collaborated with Tony Attwood. I like the idea of making a giant book... I might do that myself.




^AceofPens I hadn't thought about this but that's a good point to consider, especially since I was homeschooled and raised in a foreign culture all through childhood, so no one (including myself) suspected AS until an autistic friend mentioned it to me months ago. Thanks.

So much to think about...

Some of my tests were done directly onto her tablet, which scored them as we went along. (e.g., facial expression recognition testing, which was multiple choice after seeing someone's eyes and guessing their emotion). There were some tests similar to the online ASD tests which I also did on her tablet. I had to do dot-to-dot games by linking certain variables like a dot-to-dot (numbers or letters in order, alphabets skipping a letter), using pencil and paper.

There was definitely a lot of talking but it's their job to accommodate you. They can work for their money if they're the psychologists!