Adult Autism Diagnosis?

[Kooks and Bay Bay]

Went for my first appt today where he just interviewed my mom and I together.

It was only an hour and I wish we could have dived in to a few of my symptoms but it was a very rapid fire random question that didn't have time to elaborate and the questions did not address a few things that I wanted to tell him like how much I prefer sitting on the floor. He probably thought I looked comfortable sitting on the couch but man how I wanted to sit on the floor lol.
When we were making our next appt something was mentioned about breakfast and I said how I feel sick every morning and just have a banana most days and feel faint a lot and he seemed very interested in that but unless he made a quick note of it I'm not sure if he will recall that info which I do think is important.
So I am hoping to real quick bring up those things and always being told I was mature and an old soul when I was younger but then being told I'm immature for my age with the things I enjoy like Disney and old movies and old songs etc.

He said we may need one or two more appts but from what he gathered today he is likely to diagnose me with moderate to high functioning Autism.

I'm just wondering if you've been diagnosed with Autism as an adult did the appts seem rapid fire and just on the surface or maybe the first one but then subsequent appts were more of a deep dive?

 

[Keladry84]

Went for my first appt today where he just interviewed my mom and I together.

It was only an hour and I wish we could have dived in to a few of my symptoms but it was a very rapid fire random question that didn't have time to elaborate and the questions did not address a few things that I wanted to tell him like how much I prefer sitting on the floor. He probably thought I looked comfortable sitting on the couch but man how I wanted to sit on the floor lol.
When we were making our next appt something was mentioned about breakfast and I said how I feel sick every morning and just have a banana most days and feel faint a lot and he seemed very interested in that but unless he made a quick note of it I'm not sure if he will recall that info which I do think is important.
So I am hoping to real quick bring up those things and always being told I was mature and an old soul when I was younger but then being told I'm immature for my age with the things I enjoy like Disney and old movies and old songs etc.

He said we may need one or two more appts but from what he gathered today he is likely to diagnose me with moderate to high functioning Autism.

I'm just wondering if you've been diagnosed with Autism as an adult did the appts seem rapid fire and just on the surface or maybe the first one but then subsequent appts were more of a deep dive?

An evaluation and diagnosis should cover many different aspects of functioning, looking at both present and history. It is common for it to take place over multiple days. The conversation/questions is just one aspect, and there should also be different types of testing, which would differ depending on if you are doing diagnosis through a neuropsychologist or behavioral psychologist. Some of the things in mine in addition to the interview were ADOS, SRS (social responsiveness scale), Vineland, and a couple of others that I can't remember. If you are with a neuropsychologist, some of the tests will be even more specific based on neuro functioning, etc.

Based off of one conversation, I don't think there is any way to know at this time if you would receive a diagnosis or not. No matter what the outcome, you should receive a pretty in-depth report at the conclusion of the evaluation that will give you insight into your strengths/weaknesses and functioning, as well as resources and recommendations for your next steps.

Going through diagnosis as an adult is nerve-wracking, and also life-changing, regardless of the outcome. I wish you luck (and patience as it can take awhile for results).

 

[Kooks and Bay Bay]

An evaluation and diagnosis should cover many different aspects of functioning, looking at both present and history. It is common for it to take place over multiple days. The conversation/questions is just one aspect, and there should also be different types of testing, which would differ depending on if you are doing diagnosis through a neuropsychologist or behavioral psychologist. Some of the things in mine in addition to the interview were ADOS, SRS (social responsiveness scale), Vineland, and a couple of others that I can't remember. If you are with a neuropsychologist, some of the tests will be even more specific based on neuro functioning, etc.

Based off of one conversation, I don't think there is any way to know at this time if you would receive a diagnosis or not. No matter what the outcome, you should receive a pretty in-depth report at the conclusion of the evaluation that will give you insight into your strengths/weaknesses and functioning, as well as resources and recommendations for your next steps.

Going through diagnosis as an adult is nerve-wracking, and also life-changing, regardless of the outcome. I wish you luck (and patience as it can take awhile for results).

Thanks for the info.
Just wanted to say I'm seeing a neuropsychologist.
He said some of the tests may be difficult to preform since I'm also visually impaired.
I think some are questionnaires which is fine because someone can read it to me but he said one thing is a flip card so IDK if I'd be seeing imagines and trying to figure out people's expressions or something? And I may have a hard time doing that due to my existing disability.

 

[Keladry84]

Thanks for the info.
Just wanted to say I'm seeing a neuropsychologist.
He said some of the tests may be difficult to preform since I'm also visually impaired.
I think some are questionnaires which is fine because someone can read it to me but he said one thing is a flip card so IDK if I'd be seeing imagines and trying to figure out people's expressions or something? And I may have a hard time doing that due to my existing disability.

They should hopefully work with you to adapt for your other disability. I'm sure you are not the first to do the testing with those difficulties.

 

[jennab]

I did an adult neuropsych eval a few years ago for possible ADHD. Besides an interview, there was a few tests. Some were puzzles (like make the blocks match the shape on the picture), some where verbal (they should say a word and I was supposed to think of an opposite word or something like that), and then a computerized test in which I was to hit a button when I saw a certain number or letter. I believe there were also some questionnaires I had to fill out about myself.

 

[Kooks and Bay Bay]

I decided to send a quick email today just to mention a few things I feel like I left out and/or did not come up the other day.
I figured this way he could just read it real quick to make a note of anything he may want to discuss further or decide if what I mentioned is even relevant to diagnose me.
I realize it seems a bit much but I also did not want to waste time trying to explain these things in detail if they were not important and take up valuable time from the actual appt.

 

[Bluesyblu]

My son is in the middle of this process at the minute. It’s pretty in depth. He’s had two 2hour appointments and one 1 hour appointment so far and we’re only about half way through the ADOS. There was also sensory profile questionnaires to be completed. He will still have an OT assessment (he’s being assessed for dyspraxia at the same time) to go, and probably still another 2 hour psychology appointment before a diagnosis is received. My son is just elementary school age so maybe the kid one is a bit longer but just wanted to give an example that it can be a lot and you may still have a more appointments to go. Keep going!

 

[Kooks and Bay Bay]

My son is in the middle of this process at the minute. It’s pretty in depth. He’s had two 2hour appointments and one 1 hour appointment so far and we’re only about half way through the ADOS. There was also sensory profile questionnaires to be completed. He will still have an OT assessment (he’s being assessed for dyspraxia at the same time) to go, and probably still another 2 hour psychology appointment before a diagnosis is received. My son is just elementary school age so maybe the kid one is a bit longer but just wanted to give an example that it can be a lot and you may still have a more appointments to go. Keep going!

I'm guessing the adult process is much simpler because he said it was one or MAYBE two more appts and didn't seem like it would take long.
It's more for validation than providing lifelong resources since I am nearly 40 and have coped with these things during what would be the most difficult phases of life already.
And I don't think I'd need as much observation time because I don't really have that many outwardly behaviors nor do I have other learning disabilities that he would be trying to diagnose.

Hope all goes well for your son.

I'll update with my progress after the next appt.

 

[Madteaparty001]

DH did this a few years ago and there were various puzzles and attention related tests as they were checking mainly for ADHD. The ASD diagnosis only came about because the interviewer noticed him fidgeting and asked if he was uncomfortable. This led into a rant about how his clothes were bothering him and how he felt like he needed to wash his hands. The interviewer continued to question about other things that were bothering him in his day to day life and DH explained along with his coping mechanisms.

My advice to you is to lean into the issues you usually mask to fit in and bring them up. If you have the urge to sit on the ground all of the time because it is more comfortable ask the interviewer if you may do so. If pacing helps you regulate (like it does for DH) then do it. The doctor can not diagnose what they do not see or hear about. DD is ASD and has a re-evaluation every few years for IEP purposes and this process usually goes from 9-3 with several small breaks and a lunch break. It includes an interview along with several intelligence and 'stress' tests to see how she copes and responds to social and sensory stimuli.

 

[Kooks and Bay Bay]

Update:
Went for my second appt today.
It was only 1 hour and was again just lots of questions asked to myself and my mom.
He seemed more interested in giving me resources to get job training than assessing me. (Being visually impaired I've had resources like this and they want to give you jobs you're unable to do. I even contacted the place he mentioned and they said they would just be referring me to the same place I've already used.)

I'm going likely only one more time on Monday which he said we'll be talking about anxiety/depression.

IDK I was under the impression this was not going to be just me talking and acting polite, respectful, and easy going because I was taught how to act appropriately in public and especially to authority figures. (but all bets are off with my family and friends in my house etc. Then I speak my mind and wear pajamas, and sit on the floor, and get upset over changes in plans, and must make sure there is at least one menu option that I'm willing to try before going somewhere new to eat).

 

[jennab]

Update:
Went for my second appt today.
It was only 1 hour and was again just lots of questions asked to myself and my mom.
He seemed more interested in giving me resources to get job training than assessing me. (Being visually impaired I've had resources like this and they want to give you jobs you're unable to do. I even contacted the place he mentioned and they said they would just be referring me to the same place I've already used.)

I'm going likely only one more time on Monday which he said we'll be talking about anxiety/depression.

IDK I was under the impression this was not going to be just me talking and acting polite, respectful, and easy going because I was taught how to act appropriately in public and especially to authority figures. (but all bets are off with my family and friends in my house etc. Then I speak my mind and wear pajamas, and sit on the floor, and get upset over changes in plans, and must make sure there is at least one menu option that I'm willing to try before going somewhere new to eat).

Is there a reason you are looking for a diagnosis? Is it just for your own peace of mind? I’m asking because when I had an adult ADHD eval, it came back that I was “borderline”, meaning I could have ADHD (inattentive), but had likely learned coping skills throughout my life. That may be why he’s asking you a lot of questions.

 

[Kooks and Bay Bay]

Is there a reason you are looking for a diagnosis? Is it just for your own peace of mind? I’m asking because when I had an adult ADHD eval, it came back that I was “borderline”, meaning I could have ADHD (inattentive), but had likely learned coping skills throughout my life. That may be why he’s asking you a lot of questions.

Yes its really just for self validation because I feel I exhibit a lot of autistic traits both mentally like having the same routine, needing time to mentally prepare myself for things even like eating pizza from somewhere I don't like, hating when people come to my house for a holiday dinner, hate going to other people house, needing a ton of alone time... As well as physical traits like stims, preferring the floor, most clothes feeling super uncomfortable to the point that when I find something I like I buy it in multiple colors/patterns, being called the princess and the pea by my friend for only being able to wear 2 different types of sneakers and never having found other shoes to be comfortable.
I feel like he has only been asking about was I obsessed with an odd toy as a child (like something that wasn't even a toy or wasn't a toy that a normal kid would be playing with for as long).
Or did I refuse to eat things as a child. (Um grew up with boomer parents in the 80's/90's. You ate what you were given).

And my mom says she can't recall anything odd but she admits to me after the appt that she was working full time with 3 kids and kinda just did what she had to so doesn't really feel like she would have picked up on stuff.
Besides I had 2 older sisters so we played together etc.

I think I'm just very well adapted and needed to be since I have a visual impairment.
Like I could not afford to say that I didn't like when practical strangers were all up in my face looking at my eyes or that I didn't like to be in doctor offices for 2 hours unable to run around and being surrounded by a bunch of people.

At the end of yesterday he had gone from moderate/level 2 autism to one more session but I don't think you have autism at all...

 

[jennab]

Yes its really just for self validation because I feel I exhibit a lot of autistic traits both mentally like having the same routine, needing time to mentally prepare myself for things even like eating pizza from somewhere I don't like, hating when people come to my house for a holiday dinner, hate going to other people house, needing a ton of alone time... As well as physical traits like stims, preferring the floor, most clothes feeling super uncomfortable to the point that when I find something I like I buy it in multiple colors/patterns, being called the princess and the pea by my friend for only being able to wear 2 different types of sneakers and never having found other shoes to be comfortable.
I feel like he has only been asking about was I obsessed with an odd toy as a child (like something that wasn't even a toy or wasn't a toy that a normal kid would be playing with for as long).
Or did I refuse to eat things as a child. (Um grew up with boomer parents in the 80's/90's. You ate what you were given).

And my mom says she can't recall anything odd but she admits to me after the appt that she was working full time with 3 kids and kinda just did what she had to so doesn't really feel like she would have picked up on stuff.
Besides I had 2 older sisters so we played together etc.

I think I'm just very well adapted and needed to be since I have a visual impairment.
Like I could not afford to say that I didn't like when practical strangers were all up in my face looking at my eyes or that I didn't like to be in doctor offices for 2 hours unable to run around and being surrounded by a bunch of people.

At the end of yesterday he had gone from moderate/level 2 autism to one more session but I don't think you have autism at all...

I think it’s much harder to diagnose adults, as like you said, we all had to learn coping mechanisms throughout our life. Sometimes on our own because there just wasn’t the same types or supports back then.

Well I hope you get answers to your questions! I did the eval because we wanted to see if adhd meds would help me and they needed an official diagnosis to prescribe them.

 

[lanejudy]

Yes its really just for self validation because I feel I exhibit a lot of autistic traits

It is highly possible to have "autistic traits" without fully qualifying for an ASD diagnosis. My daughter has several behaviors that are similar but she does not have an ASD diagnosis. There may be other diagnoses to consider if you are really needing to put a name to it. Though as PP mentions it may be harder to pinpoint diagnosis in adults due to masking or learned coping skills.

I hope you find the validation you seek.

 

[Madteaparty001]

Yes its really just for self validation because I feel I exhibit a lot of autistic traits both mentally like having the same routine, needing time to mentally prepare myself for things even like eating pizza from somewhere I don't like, hating when people come to my house for a holiday dinner, hate going to other people house, needing a ton of alone time... As well as physical traits like stims, preferring the floor, most clothes feeling super uncomfortable to the point that when I find something I like I buy it in multiple colors/patterns, being called the princess and the pea by my friend for only being able to wear 2 different types of sneakers and never having found other shoes to be comfortable.
I feel like he has only been asking about was I obsessed with an odd toy as a child (like something that wasn't even a toy or wasn't a toy that a normal kid would be playing with for as long).
Or did I refuse to eat things as a child. (Um grew up with boomer parents in the 80's/90's. You ate what you were given).

And my mom says she can't recall anything odd but she admits to me after the appt that she was working full time with 3 kids and kinda just did what she had to so doesn't really feel like she would have picked up on stuff.
Besides I had 2 older sisters so we played together etc.

I think I'm just very well adapted and needed to be since I have a visual impairment.
Like I could not afford to say that I didn't like when practical strangers were all up in my face looking at my eyes or that I didn't like to be in doctor offices for 2 hours unable to run around and being surrounded by a bunch of people.

At the end of yesterday he had gone from moderate/level 2 autism to one more session but I don't think you have autism at all...

So I'm going to agree with @lanejudy that there are various diagnosis that share autism traits without actually having autism and it sounds like that may be what's happening here from what you've described. Those on the spectrum do not usually have the capability of 'eating what they are given' or coping when extremely uncomfortable from a lot of doctors in their faces. Just using my DD as an example, when she was younger and was given non preferred food she would sit at the table for hours refusing to eat. If cajoled into trying a bite she would immediately gag and start to throw up. When in the hospital for testing and she hit her 'no more' threshold it took several staff to hold her down and sedate her.

When DD is overwhelmed she can get to a point where she loses control of herself and becomes violent, she'll lash out verbally and physically. She's considered highly intelligent and high functioning yet she is wired in a way that overstimulation will result in the need for several interventions. Autism is not just about being extremely sensitive to stimuli, it's also about how you respond to it.

People on the spectrum can have coping mechanisms to stop them from reaching these points but they can not remove the possibility of a trigger all together. If you focus on 'it has to be ASD' then you could miss the real diagnosis and the correct resources you need. Autism is by definition: a condition related to brain development that affects how people see others and socialize with them. If you do not have problems in this area you're looking for solutions in the wrong place. A good litmus test is looking at your own inner circle, is it made up of a lot of people on the spectrum? People on the spectrum tend to gravitate towards each other. I've heard it described as them being able to tune into the same radio station and understand each other better.

 

[Kooks and Bay Bay]

. I good litmus test is looking at your own inner circle, is it made up of a lot of people on the spectrum? People on the spectrum tend to gravitate towards each other. I've heard it described as them being able to tune into the same radio station and understand each other better.

My circle consists of my parents, 2 sisters, 3 nieces, 1 nephew, and my best friend since first grade.
Not many people that I surround myself with.
My one sister and one niece have ADHD and my other niece has Autism.

 

[Madteaparty001]

My circle consists of my parents, 2 sisters, 3 nieces, 1 nephew, and my best friend since first grade.
Not many people that I surround myself with.
My one sister and one niece have ADHD and my other niece has Autism.

If you're uncomfortable with new people and places this could suggest social anxiety. DD's circle is made up of family and people from school who are either in her gifted cluster or part of the school's social worker run social group for kids on the spectrum. She is often suspicious of her interactions with neurotypical children as she thinks they are either being rude or too nice, she has a very difficult time with nuances. Where most people will see disinterest or indifference she sees hostility. Where most see enthusiasm and joy she sees possible insincerity and deceit. She also has a hard time staying engaged with conversations that don't involve her special interests. These are classic examples of Autism. OCD, sensory processing disorder, feeding issues, GI issues, sleep disturbances, depression, anxiety, etc.; these are all considered comorbidities of Autism, they are not what Autism are. That's why people say you can have autistic traits while not having Autism, because they're actually talking about these comorbidities that are associated with it.

When DD was first diagnosed her psychologist actually sent her to an ASD specialist to confirm her diagnosis. This is because gifted children often share many autistic traits and she wanted to be sure that she was both ASD and gifted. Her theory was that her high intelligence was masking her ASD and her ASD was masking her high intelligence. The ASD specialist confirmed the diagnosis and thus her supports in school included both academic and social work accommodations. If you are not comfortable with the testing and interview process of your current psychologist seeking a second opinion is not a bad thing.

 

[Kooks and Bay Bay]

If you're uncomfortable with new people and places this could suggest social anxiety

To be clear I'm actually more comfortable interacting with new people as I can pretend easier.
What gives me more anxiety is having multiple people that I know coming over to my house. I'm one that will clean up the kitchen while everyone else is talking in the other room and then I'll go upstairs until it sounds like everyone is ready to leave and I'll come back down to say goodbye.
Or like last week I went to my sister's for a picnic and I stayed in one spot that I knew not many people would interact with me and quietly left.
One of my biggest times that I'm anxious in public is at the airport. Its stressful to wait in the security line and I don't like being so close to people on the plane. (I am not claustrophobic of the plane but just of not having enough personal space).
I actually find that when I'm surrounded by thousands of people like at Disney I feel more myself because I'm not being perceived by anyone.
Not sure how all that plays into it but what bothers me is that this professional has not asked me any questions related to this type of situation.
I think he has tried to make me feel uncomfortable with certain things he says and asks but I'm not going to outwardly act uncomfortable because I don't want to come across as rude but once we leave my mom and I were both like what the heck was xyz about that was a weird comment to make or weird question to ask.
And its like I KNOW that I'm not like everyone else but I feel like he is misunderstanding me to the point that he will determine there's "nothing" wrong with me.

(As an example of uncomfortable things... my email is my first and last name but because its tied into my youtube account after there are back and forth messages it pops up with that username. The other day instead of talking to me using my actual name he kept referring to me as my username which is very clearly a username not a name name. It felt very invasive and unprofessional.
Oh and he kept talking about various exercises I could do. This was after I had mentioned losing weight and walking being my choice of exercise and how I've tried other exercises but they tend to be too difficult to maintain but walking is what I can easily do and enjoy. It was like he wanted me to tell him no I don't want to do those things that you're mentioning but again that would be rude so it was a smile and nod.)

 

[Keladry84]

To be clear I'm actually more comfortable interacting with new people as I can pretend easier.
What gives me more anxiety is having multiple people that I know coming over to my house. I'm one that will clean up the kitchen while everyone else is talking in the other room and then I'll go upstairs until it sounds like everyone is ready to leave and I'll come back down to say goodbye.
Or like last week I went to my sister's for a picnic and I stayed in one spot that I knew not many people would interact with me and quietly left.
One of my biggest times that I'm anxious in public is at the airport. Its stressful to wait in the security line and I don't like being so close to people on the plane. (I am not claustrophobic of the plane but just of not having enough personal space).
I actually find that when I'm surrounded by thousands of people like at Disney I feel more myself because I'm not being perceived by anyone.
Not sure how all that plays into it but what bothers me is that this professional has not asked me any questions related to this type of situation.
I think he has tried to make me feel uncomfortable with certain things he says and asks but I'm not going to outwardly act uncomfortable because I don't want to come across as rude but once we leave my mom and I were both like what the heck was xyz about that was a weird comment to make or weird question to ask.
And its like I KNOW that I'm not like everyone else but I feel like he is misunderstanding me to the point that he will determine there's "nothing" wrong with me.

(As an example of uncomfortable things... my email is my first and last name but because its tied into my youtube account after there are back and forth messages it pops up with that username. The other day instead of talking to me using my actual name he kept referring to me as my username which is very clearly a username not a name name. It felt very invasive and unprofessional.
Oh and he kept talking about various exercises I could do. This was after I had mentioned losing weight and walking being my choice of exercise and how I've tried other exercises but they tend to be too difficult to maintain but walking is what I can easily do and enjoy. It was like he wanted me to tell him no I don't want to do those things that you're mentioning but again that would be rude so it was a smile and nod.)

What you're describing here sounds a lot like social anxiety. Some autistics have social anxiety, some don't.

As to the awkward questions/comments - these very well might be intentional to see how you react/process it. Autistic individuals are likely to have a different response or reaction than those who are not.

If the professional is not asking you about things that you think are important to share, then you should share those things even if not asked. This is your evaluation, and for you to trust the outcome, you need to make sure you have shared everything that you think is important.

What it really comes down to is: do you trust this professionals expertise, experience, and background or not? If yes, continue with the process, if no, stop racking up more bills and find someone who specializes in autism diagnosis so that you can trust the outcome.

As others have said - there are many different conditions that share traits with autism. It sounds like you are going into the evaluation convinced you are autistic, but keep in mind that it might not actually be autism. Keep an open mind, and whatever the results, use the knowledge that you gain to help yourself better manage your day-to-day and relationships.

 

[Kooks and Bay Bay]

What you're describing here sounds a lot like social anxiety. Some autistics have social anxiety, some don't.

As to the awkward questions/comments - these very well might be intentional to see how you react/process it. Autistic individuals are likely to have a different response or reaction than those who are not.

If the professional is not asking you about things that you think are important to share, then you should share those things even if not asked. This is your evaluation, and for you to trust the outcome, you need to make sure you have shared everything that you think is important.

What it really comes down to is: do you trust this professionals expertise, experience, and background or not? If yes, continue with the process, if no, stop racking up more bills and find someone who specializes in autism diagnosis so that you can trust the outcome.

As others have said - there are many different conditions that share traits with autism. It sounds like you are going into the evaluation convinced you are autistic, but keep in mind that it might not actually be autism. Keep an open mind, and whatever the results, use the knowledge that you gain to help yourself better manage your day-to-day and relationships.

Thanks for the reply.
I guess I'm not convinced that its autism but rather that its SOMETHING.
And I AM convinced at the very least I have sensory processing disorder and I very specifically mentioned it and TRIED to talk about things that make me uncomfortable but he didn't even let me get beyond liking relaxed fit clothes even though I have various other sensory issues like hating sirens and other loud noises because they physically hurt my ears, or hating wind in my face because it makes me flinch and I wear a hood if its windy because otherwise it roars in my ears, and I hate touching MY OWN feet because they tickle so bad, and not being able to touch certain fabrics, and not being able to sit on certain surfaces too long, and the fact that I have visual snow could be a sensory processing disorder.

I'm only going one more time and I have good insurance so the who thing is costing me $30 so I'm not concerned about bills.
I'm more concerned about the potential time I'm wasting and the fact that I'm questioning if I'm making it all up.