Diagnosis

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I’m making an appointment for psychological testing to try and get diagnosed. I’m not sure why now, at 24, my symptoms have gotten so much worse. I think it could be due to burnout, and an inability to continue to mask. I think I may have an anxiety disorder, because every symptom of Generalized Anxiety Disorder hit home to me, and I can’t handle it anymore. I’m worrying about everything, and it feels almost like I have a job interview every single morning.. I have that nervous anxious feeling constantly. I remember feeling this way since I was a kid but I’ve done nothing about it, and it’s becoming hard to function. I only want to focus on my special interests and nothing else, so that is inhibiting school work. The place I am going to tests for a range or conditions including: ADHD, Anxiety Disorders, Aspergers/Autism, Behavioral disorders, etc.

I’m wondering, what should I expect from this evaluation?

I don't know what to expect as I am waiting to be tested myself. The wait makes one ask lots of questions! I joined this site after I was put on the list. I did not know there was a list of an assessment before. I assumed my local doctor could give me a yes or no decision when I asked! Haha! I knew nothing about how things work!

The sooner you go on the list, the sooner you will be seen.

I am in the U.S. where the Autism Spectrum Disorder diagnostic criteria are specified by DSM-5 and the assessment process is ADOS. If you are not in the realm of DSM-5 then I dunno.

My adult autism assessment was in 2019 while I was 64 years old. ...It was kind of fun!...

I am a pack-rat for accumulating records so I gave the psychologist more than 100 pages of records that I thought they may or may not want to see. (It was printed double-sided so it was a little over 50 pieces of paper.) I included a copy of the Autism-Spectrum Quotient Test I had taken online and my score (40 out of 50) and past MBTI test results (I lean strongly toward INTJ), all of my old report cards and college transcripts, standardized test and college admission test scores, a resume, and the only thing I know the psychologist examined carefully: a memento journal my Mother had used to record my first year. (Note that I was not asked to supply any of that stuff and I don't now that it was needed--and the only thing I know the psychologist found interesting was Mom's journal.)

I also took my bride to the first appointment. The psychologist talked to us both and we got some work to do before the second session--to which she was not invited. My father is still alive so the psychologist gave us some questions to ask him...though he was 89 then, and while his mind is still clear he tends to not be too interested in stuff so the psychologist didn't ask for much from him...and questionnaires for us.

The second session, which was just me and the psychologist, was entertaining. She had me fill out some questionnaires while she ate lunch, and also did some exercises with me (not physical exercises, mental exercises)--and they were clearly designed for young children.

The third session is when the psychologist briefed us on the results.

I assume there may be some variation in how different psychologists do it so you might have more (or fewer) sessions than me. And, it will have to be tailored to your situation (for instance, what resources are available to speed the assessment up), and to what you want (for instance, I did not need an IQ test and was not interested in follow-on therapy...I just wanted to know whether or not I was Autistic).

But I enjoyed the assessment! I hope you do, too.

Congrats! I'm really happy for you to make this choice. I know it's a big step and you were weighing the decision quite carefully. I hope everything goes well for you and you feel comfortable in the process.

I think everyone's assessment is slightly different, but here's my version:


Prep:
- I scheduled privately through my university's Neuropsychology program
- They sent me a long questionnaire about my reasons for wanting assessment (completed online)
- I had to sign permissions for them to gather my medical history from my doctor / through insurance
- Then they sent me several pages of Developmental History questions to submit before the appointment
(I can link to another WP thread where I described the DH questions, but I'll have to look for it)
- My response to the DH questions became a special interest obsession as I waited for the big day
- I wrote a 188 page book to answer the DH questions, with scanned photos and cross-referenced answers
(I tend to go big or go home, but in fairness there were hundreds of questions)
- It took me over 2 months (24/7) to compile my book, which was professionally printed and bound
- I sent it by courier about a month ahead of my appointment because it was so long

Here's the cover of my book (with my name, baby photo, and contact info covered up for online privacy)




That's the side view lol ^.

- Yes it was a very long book but I'm very thorough and I gave a lot of evidence
- I also gave links to videos from my childhood showing my mannerisms and behaviour

The Appt:
- I had a marathon session about 12 hours long
- I don't mask at the best of times, so I didn't mask there at all
- I sat on the floor in a pretzel shape and did all my stims as needed (without exaggerating anything)
- She admitted she didn't read my whole book (lol), but used the index to find what she needed
- The testing was nothing like I expected -- it was much less interview based and much more data driven
- I did do the AQ test but it was verbal, and it was only one of about 50 similar personality inventories
- I did hours of computer / verbal / pencil-paper tests for non-verbal and verbal IQ
- I was tested with "The Eyes Test" (reading people's emotions through their eyes)
- I did the ADOS but had never heard of it at the time, so I didn't know it was happening
- There were a lot of word play games, listing words that start with the same letter etc
- There were a lot of timed tasks including connecting dots with paper and pencil
- I did visual-spatial tests where you have to rotate a shape or predict the next shape in the sequence
- There was a big focus on sensory issues and repetitive behaviours / routines / restricted interests
- I can't remember it all but I'll find a list of all the tests for you

Here's the list!


Each one of these tests involved multiple subtests. ^ The day was really exhausting!

End of Day 1:
- I didn't think I was allowed to ask her opinion but I did anyway
- I was so nervous I said "Do you think I have Aspergers?" (silly question: I know Aspergers isn't a diagnosis)
- She said I definitely wasn't "Aspergers" even on the old scale, and I wasn't even High Functioning
- She told me verbally that I would end up being Level 2 or possibly even lower in some areas

At Home:
- At home I had to do more questionnaires online using an encrypted code to submit my results
- These tests were sent to a third party group somewhere in USA (I'm not American) for double blind comparison
- The questionnaires at home were the type where you rate yourself "Always, Sometimes, Never" etc
- My daughter was sent a bunch of questionnaires about me as well
- She wasn't allowed to show me the questions or compare answers with me
- She sent them by encryption to USA after mine were sent

The Doctor:
- She received the results of my home questionnaires and incorporated it with my testing-day scores
- She wrote a 30 page report and sent me a copy by email, about a month after that first appointment
- I was asked to read it and let her know if there was anything I disagreed with
- I found a few typos but otherwise it was fine and I agreed with what she wrote

Appointment 2:
- I went back to see her a second time to get my formal / edited copy of the report in hard copy form
- I had to sign permissions so she could send it directly to my doctor, psychiatrist, therapist, etc
- Then she sent me another encrypted link so I could have an online copy for my records
- We talked about the types of therapy she recommended

Afterward:
- I didn't open the online copy of my report fast enough and the encryption code expired
- I had waited about a month to look at it online because I was reading the paper copy
- I emailed her again for a new code and was able to download the e-copy of my report
- In this conversation she suggested that I might want to look into ADHD testing as a follow up

The Report: Here's just a sample of how it was presented



























Then I did ADHD testing two years later, with their affiliate company.

IsabellaLinton, I'm detecting a pattern! My psychological evaluation included the sentence "Mr. redacted was observed to be an organized individual, as he presented the examiner with copious amounts of documentation and records, to include a detailed index." (Mine was not professionally bound, however, but I was proud of what was actually a TABLE OF CONTENTS, not an index, and that I had gotten page numbers on to a collection of 36 independent documents.)

A lot of my free time is spent organizing information. I enjoy it.

Oh noo. I don't have any doctors medical history up until about four or five years ago as my previous doctors said they lost it when I changed doctors. If it was retained it would show years and years of me trying to ask for allergy testing (Which was never available on the NHS with those doctors as they never had the budget to do it) as I was told that it was some sort of allergy... Turns out they were shutdowns. But after years of being labelled as a complainer and only being allowed one 3 minute appointment a year, I changed doctors and it is like going from a 3rd world country into the modern world... There is such a difference. But my and my Mums medical records were all lost conveniently by the old doctors when they found out we were going to change.

Yeah, I'm laughing too!

I posted that response before I read yours. There's definitely a pattern! My doctor told me later that as soon as she saw my manifesto arrive in the post, she knew I was likely on the spectrum. It's all about attention to detail and hyperfocus (overplanning). I put a note with the book telling her that she didn't need to read the whole thing, or if she did I would pay her extra for the time spent. I prepared it for my own sake and wanted to keep it forever (hidden from everyone -- no one has seen it except for the doctor, because it includes details of my trauma years -- my daughter doesn't even know about it so I really hope she doesn't read this thread ).

I only answered the Developmental History questions I was given, but that involved going over the same topics again and again for the different stages of my life.

They're all answered in my book along with photos of my life, quotes, song lyrics, school report comments, and video links from our 1960s-1980s home movies. I had to transfer them from old film projector reels, to DVD, to downloads, to YouTube, to use as links.

That was another whole ordeal.

Developmental History Questions I was given by the doctor:

(To the OP, these are good topics to consider ahead of time even if you don't write a book!)

Part 1
General Background
Existing Disorders (Primary, Congenital)
Medications
Allergies
Past Illnesses
Hospitalisations / Surgeries (about ten categories of questions)
Speech, Psychology, Psychiatry, Social Work, OT, and Other Services
(several pages of history)

Part 2
Developmental History up to PreSchool
Birth Information
Mother's Health History
Difficulties in Infancy (Eating, Sleeping, Motor Mannerisms)
Language Development
Gross Motor Skills
Age of first words, phrases, functional speech
Repetition of Words (Echolalia)
Hearing
Pronoun Reversal and Neologisms
Use of Gestures and Eye Contact
Pointing to Objects
Following a Point
Responding to My Name
Social Chat
Initiating Conversation
Reciprocal Conversation
Giving and Showing Toys / Items to Others
Response to Affection
Offering Comfort
Sensory Issues (all five senses, each described in relation to sleep, eating, clothing, etc).
Stims and BFRB as a baby
Engaging with Peers
Eye Contact and Face-Blindness
Comfort Level with Strangers
General Fears
Family Dynamic
Playing with Cousins and Neighbours
Special Interests in Early Childhood
Other Info from Early Childhood

Part 3
School-Aged History until end of Uni
Names of Schools and Dates Attended

School described year by year:
* I had to repeat the answers over and over for each level / stage of school, with proof if available
Motor Skills
Response to School Setting
Initiation of Social Interaction
Imitation of Others
Describe Your Make Believe Play
Play Dates and Friends
Types of Interests / Toys / Games
Social Activities, Lessons, Clubs, Extracurriculars
Obsessions
Sensory Issues (all five senses, described in relation to sleep, food, etc., with examples)
Stims and RBFB by developmental age
Fears
Repetitive Interests / Behaviours
Response to Change in Routine / Transitions
Tantrums and Mood
Hand Preference
Written Language Skills
Special Education Services
Range of Achievement
Milestones of Independence (e.g., being home alone)
Strengths and Challenges (by age and subject)
Sleep Issues
Dealing with Responsibility (homework, chores)
Response to Travel including field trips and family travel
Holidays and Special Occasions
Reflections about my feelings, fears, friends, social clubs, each by year
Birthday Parties (mine and other kids)
Tertiary Education:
Areas of Study
Social Involvement

* Section 3 took me forever! It was about 60 pages

Part 4
Body Image
BFRB, self-concept, etc.
Puberty and Sexual Development
Best Memories / Worst Memories pertaining to self-concept

Part 5
Organisational Skills and Executive Function
Attention Issues (ADHD etc)
Applying Knowledge in Functional Ways
Problem Solving and Daily Functional Abilities

Part 6
History of Jobs
Successes, Challenges
Need for Accommodations
Relationships with Colleagues
Financial matters (understanding money, budgeting)

Part 7
Relationships
Dating, Marriage, Parenting etc.
Interpersonal Conflict and Communication

Part 8
Current Life: Friendships / Relationships
Social Involvement
Making Plans
Current Activities (liked and disliked)
Sense of Humour
Echolalia and Verbal Communication
Affection
Expression of Emotion
Reading Emotions
Understanding Social Rules / Situations
Social Scripts / Safety Plans
Special Interests
Stims and BFRB (current)
Rigidity and Repetitive Behaviours / Thoughts

Part 9
Emotional and Psychological History
Ongoing Fears
Ongoing Sensory
Ongoing Self-Concept

Part 10
Family Summary
Paternal / Maternal Psychiatric History
Siblings and ASD characteristics in family members

Brainiac42 & Mountain Goat, don't fret if IsabellaLinton and I share some weirdnesses that you don't have. I have seen things on the Internet where some folk have tried to categorize different kinds of Auties--you might just be one of the other types of weird.

(And, yes, I don't take MY Autism too seriously. It's mild enough and I'm old enough that it's not worth getting agitated about it. I fully realize that other Autistics have experienced it much differently than I have.)

P.S. IsabellaLinton were you in the land of DSM-5 when you were assessed?

Yes I was assessed with DSM5.

Also, I should add that my daughter was assessed at a different centre.
Her assessment doctor is autistic herself, and she offers therapy / assessments for autistic adults.

Her report is only about ten pages and it's much more anecdotal, with a few testing scales.

It was nowhere near as complicated or formal as mine, but it's still a valid diagnosis.

It seems everyone has different experiences!

Sidenote: My daughter is starting ADHD testing shortly from the place that did my ADHD testing.
That will be really interesting, as I'm positive she'll be identified.

@mountaingoat: They wanted my medical records just to see if I had any other preexisting conditions which might explain my behaviours, as opposed to Autism (e.g., ADHD, mental health issues, etc).

They weren't looking for proof that I had sought help for Autism.

If you don't have your records you can still sign a waiver for the assessor to attempt locating them.

If they can't find them, I'm sure you'll be fine with whatever your current doctor can provide, and your own input about your developmental history.

IsabellaLinton, My assessment report might be more like your daughter's than like yours. My report was 12 pages and also included a lot of the psychologist's personal observations regarding me (I assume that is from what the report called the "Clinical interview") and some scales associated with the questionnaires I and my bride took. My performance in the structured exercises (which were geared for little kids!) also got worked into the report.

I don't personally have the ADHD upgrade but I married a gal who brought an ample supply of it with her.

Mountain Goat, The medical history information in my assessment report appears to be mostly based upon information that came from me, personally. Though my Mom's journal of my first year provided developmental information the psychologist found interesting.

Brainiac42, I hope you don't mind us chatting about our various experiences related to your original post. I hope you find the chatter at least somewhat interesting. And it looks, to me, that the general tone might suggest your assessment will likely not be unpleasant. You might even enjoy it. But it sounds like we can't tell you too much about what to expect because it seems that not only are all Autistics different, but maybe so are a lot of Autism Assessments!

Good luck! I'd be curious to hear how it goes for you!

The information that you have both given me has been very informative and helpful!

IsabellaLinton - I loved going through all of the information you shared. I don’t have much information to share with the doctor evaluating me. I feel like doing something similar to what you did would be very relaxing and fun, if I did have the accumulation of information.

I haven’t been evaluated before to my knowledge, and my mom said I said “dada” at 8 months old. She couldn’t tell me when I spoke my first sentence, or talked fluently but it must not have been too late to worry her. My mom writes off my quirks, obsessive interests, and social awkwardness as just that, awkwardness and quirkiness. She says she also has anxiety, and my dad says the same and that maybe I should talk to someone regarding my anxiety. She would more than likely deny an autism diagnosis, and tell the doctor that I was a normal kid.. although she told me I had meltdowns, and flapped my arms and legs often as a baby/toddler.

My sibling was very ill when I was growing up, from the time I was 4 years old and onward. I was a fairly normal kid, so my oddities and differences were ignored because I wasn’t dying. It wasn’t their fault, but I think if the evaluator involves them, especially my mom, like they did your daughter, she’d deny any issues.


DoubleRetired- It gives me hope that you and IsabellaLinton were able to get a diagnosis later in life. I was worried about getting one at 24.. I had a feeling that meant I was wrong, and that I couldn’t be autistic if I wasn’t diagnosed as a child - since I was born in the late 1990’s. I appreciate the insight and words of encouragement. No matter the outcome I’d like to at least get some insight into why I feel the way that I do.

I'm glad I could help. You're exactly my daughter's age so I get a little protective of you at times, or so it seems.

You'd likely be surprised how much you could prepare in written form, just for your own recollection or for the assessment. I'm sure you could write about your sensory issues / social issues at different stages of your life, for one thing. Just tell little stories almost like people do here on WP. My themes of course were the feeling of social alienation, sensory hell, shutdowns and meltdowns, not understanding people, etc. Sometimes one story about something lonely can morph into an answer for another question if you remember something else like a sensory issue related to it. Even a paragraph or two will help you start pulling memories out from your subconscious and help you feel in control of the appointment, when it happens.

I didn't remember much about my baby life but that's OK. Not every single answer has to prove there was an autism issue happening. You can be factual about your early years like the info about your mother's health, your birth, basic milestones, and simple memories. My mother and I have a very awkward relationship and I'm mute when I'm with her. I didn't want to ask her anything. I had to do detective work by ransacking her house for old movies, school reports, baby books, photos, etc., when she wasn't home. (Yes, I'm weird). My point is that it's OK if your mother doesn't remember everything or if you don't think she will be onboard about diagnosis. They will never ask her "Do you think Brainiac is autistic?" The questions aren't like that. If you involve her as an informant person it might involve a bit of conversation / interview, but most of her input will be questionnaires where you have no idea which answer means autism or not. And then they ask the same questions in different ways at different times to see the patterns. It's really weird because I obviously knew I was being screened for ASD but I had no idea what the "autistic" answer was supposed to be on most of the questions. They aren't what you think they'll be. These doctors know what they're doing so that people can't just fake it or say yes / no about themselves or others.

I'm rambling. I'm sorry. I hope you see my point. I wouldn't worry too much about what your mother thinks or what anyone thinks to be honest. Even your own opinion doesn't matter. The doctor never once asked me if I thought I was autistic. Most of the answers came from those verbal / nonverbal IQ tests. I had no clue if an autistic person was supposed to be able to rotate a shape in their mind or list words starting with letter a using a stopwatch.

The testing is fun in my opinion. Even if somehow you aren't considered Autistic in the end, you'll likely get valuable insight about your anxiety / psychological conditions, your learning style, and recommendations for therapy and support.

I think it's a win-win situation, whichever way you look at it.

Good points!

When my bride and I both decided I was probably a High Functioning Autistic the hardest part (for me) began: Getting past the insurance company.

They had absolutely no objection to an Adult Autism Assessment, but they also had no understanding of Adult Autism Assessments. They gave me bad referrals and bad information. That confusion delayed me months. When I finally got some correct information it did not take me too long to find a candidate psychologist practice. I gave them an unsolicited six-page explanation of why I wanted an Adult Autism Assessment. They took the job.

After that things were easy and, like I said, kind of fun!

I already mentioned giving them 100+ unsolicited pages of copies of various records I thought would be interesting, and an unsolicited 30+ page copy of the journal my Mom kept my first year. ("...copious amounts of documentation and records...")

And during the assessment I don't recall the psychologist ever asking me why I thought I might be autistic. We chatted--some of the chat my bride was part of. She had me and my bride take some questionnaires. She did some (thought) exercises with me that were funny--they were clearly designed for someone about 60 years younger than me.

She also gave us a few questions to ask my Dad. My Dad was 700 miles away, 89 at the time, and tends to be ornery so she set her expectations low and just asked a few simple questions about some specific things I did or did not do when I was very young. It was more guided reminiscing than anything else. My long-deceased Mom sort of answered some questions, too, via that journal--which is the only set of records I'm sure the psychologist found interesting.

Nobody was asked about Autism.

If you already know who will do the assessment then you are up to the fun part! Enjoy!

And then maybe share your experiences on WP...for instance on this thread.

P.S. One thing I don't share is precise details of the assessment, like specific questions, etc. I suspect if someone knew too much detail of the assessment process it might interfere with the assessment.

Thank you both!