Late in Life Autism Diagnosis

[little bongo]

I turned 60 in October, and 2 weeks ago I was diagnosed with autism spectrum disorder level 1. I was prompted to see if I could confirm a few suspicions my wife and I had, and answer a few questions about behaviors, reactions, and responses that date way back, and in many cases continue. I'm hoping our whole neuro-divergent Bongo family can kind of help and support each other (4 with ADHD, 2 autistic including myself). I think recognizing onsets of feeling overstimulated or overwhelmed might be helpful, and it might even help me reach neuro-divergent students. So overall, I think getting the diagnosis was a good step for me. Yes, I'm who I am irrespective of diagnoses and labels, and little is going to change with regard to my day-to-day work, but the diagnosis provides a useful frame of sorts--a way to find a pattern and make sense of it.

I'm curious if anyone has any experience with seeking out and receiving a similar diagnosis well into adulthood, or if anyone has ever thought about obtaining such knowledge.

 

[Ruralguy]

I'm about the same age and strongly suspect something similar about myself.

At this point though, I am only interested in pursuing avenues that can really help me or others in my life, and I just don't see how knowing this will help me. I can be different and live well enough without a specific label.
Also, if I need therapy, then I need therapy, and that might only be tangentially related to some problem such as this (at this point in my life).

[AJ_Katz]

There is a lot of power in knowing, for both the person with the diagnosis and their family members.  My sister was diagnosed in her late 20's as having ADHD and it both helped her to find medications that give her a more even keel and helped.  As a non-divergent family member, I find it helpful to know about her diagnosis because it helps me understand that some of the patterns of behavior are more related to the neurodivergence than lack of interest or intent.  She also went through a period shortly after the diagnosis where she seemed to be incredibly relieved to know why she was different and to have a name for it.  There is a lot more info and support out there than there used to be, so I hope you find that useful and interesting.

[secundem_artem]

I've long suspected that many faculty have a few drops of Aspergers combined with a teaspoon of ADHD somewhere in their makeup.  We have unusual interests that we have turned into careers. We cqn be very attached to our "thing" - an idea, concept, maybe a theory or way of seeing a problem that we developed.  Poor social skills are not unusual in the academy.  We are not famous for our empathy on things like extending due dates, or missed exams, etc.

Just looking at the list, I can see a few items that certainly apply to me.  Some of them are also characteristics or habits that have made me successful.

little bongo - are you comfortable sharing how you were evaluated and diagnosed?  Has any kind of treatment plan been offered?

[smallcleanrat]

I'm in my 30s. I was diagnosed in August of this year, along with a diagnosis of ADHD.

I haven't yet figured out what to do with the information. I'm still processing the new diagnoses, and haven't yet determined how I feel about them.

I've been debating whether or not to tell my family, as it explains a lot of my difficulties growing up. Maybe if they had known I had these issues they wouldn't have been so angry and disgusted with me when I struggled, assuming everything was a personal failing or character flaw. But I don't really feel like having to argue if they refuse to accept the diagnosis.

The psychologist who did my assessment recommended I look for a therapist experienced with ASD, in addition to finding a support group for adults with autism. She thought getting help managing symptoms and learning better social and life skills would go a long way towards mitigating my other conditions (bipolar disorder and non-epileptic seizures).

Did you get any recommendations for next steps?

[little bongo]

Thanks for the thoughtful replies--I agree that pursuing this can be helpful, but not necessarily for everyone in every situation. Our campus (I semi-outed myself previously when we were named the #1 party school, but that's another story) has a Center for Applied Psychology, where psych grad students do most of the interviewing and test administration under the supervision of the psych profs. (I had one interview with the psych prof where we got into storytelling and improv with small objects.)

There were four or five meetings altogether, about an hour each, and one together with my wife. There were interviews, some questionnaires, and some tests (metaphorical language, social skills, game playing, and so forth).

Suggested next steps had mainly to do with awareness when feelings of being overwhelmed or overstimulated began--noting surroundings, breathing, etc. Also taking walks and enjoying time in nature. Some deeper next steps involve couples counseling and possible medication adjustment and therapy related to anxiety and depression.

Obviously I'm not on top of all the recommendations and ramifications yet--for the most part, it won't be a case of, say, needing additional work accommodations. I guess that's all I've got for now.

[Langue_doc]

I would suggest talking to someone at the Howard Center in Vermont so that they can refer you to providers in your area. I'm not sure if their clientele includes adults, but I do know a child who is getting much-needed services through this organization.

[little bongo]

Thank you for this, Langue_doc. I'm very happy that the youngster you mentioned is receiving the services and support they need. I find the presence of Autism Speaks under "National Resources" a bit concerning due to the controversy they generate within the community, but I can't speak to that with authority (at least, as yet).

[Anselm]

I called 6 places a week ago after I got in trouble again for something I said at work.  I figured that I could gain some ADA protection.  This region is loaded with mental health facilities.  Well, it turns out that they are for addiction, counseling and handing out pills.  I would have to travel 90 miles away and wait 3 to 9 months for an appointment.  I want to get tested for autism, adult ADHD and anxiety.  One local office told me "we don't do the testing but afterwards you can some here to get your pills refilled".  To me that encapsulates healthcare in America, just take some pills.  Last June I was give Busiprone for anxiety but stopped after one week when the nausea kicked in, although the loss of appetite resulted in a loss of 10 pounds in one month, which is good for me.

[Kron3007]

My brother received a diagnosis late in life.  I think it was obvious to most of us growing up that his brain worked a little different, but at the time I dont think he would have been diagnosed with anything since it is relatively mild and he is very high functioning (he was always in the gifted classes etc).  Anyway, the diagnosis and related therapy seems to have been very beneficial for him, including the medication.  I am not disputing the over reliance on medication in the US, but at the same time they can be helpful.

Overall, he seems like he is in a better place mentally these days, so recognizing the issues seems like an important step.

I hope it works out for you in the same way.

[Puget]

I called 6 places a week ago after I got in trouble again for something I said at work.  I figured that I could gain some ADA protection.  This region is loaded with mental health facilities.  Well, it turns out that they are for addiction, counseling and handing out pills.  I would have to travel 90 miles away and wait 3 to 9 months for an appointment.  I want to get tested for autism, adult ADHD and anxiety.  One local office told me "we don't do the testing but afterwards you can some here to get your pills refilled".  To me that encapsulates healthcare in America, just take some pills.  Last June I was give Busiprone for anxiety but stopped after one week when the nausea kicked in, although the loss of appetite resulted in a loss of 10 pounds in one month, which is good for me.

Sorry you are having trouble accessing assessment! A couple of ideas--

1. Is there a university within striking distance that has a clinical psychology PhD program? Such programs almost always have a teaching clinic, and assessment is usually a big part of what they offer, since all the students have to be trained in assessment.They may not take insurance but often have a sliding scale. 

2. Many psychologists these days see Telehealth patients. Psychology Today, while not recommended as a publication, has a provider database where you can filter by specialty, insurance, etc. You can see if there are any neuropsychologists (the specialty you want for ASD and ADHD assessment) who do Telehealth and accept your insurance.

[Anselm]

I called 6 places a week ago after I got in trouble again for something I said at work.  I figured that I could gain some ADA protection.  This region is loaded with mental health facilities.  Well, it turns out that they are for addiction, counseling and handing out pills.  I would have to travel 90 miles away and wait 3 to 9 months for an appointment.  I want to get tested for autism, adult ADHD and anxiety.  One local office told me "we don't do the testing but afterwards you can some here to get your pills refilled".  To me that encapsulates healthcare in America, just take some pills.  Last June I was give Busiprone for anxiety but stopped after one week when the nausea kicked in, although the loss of appetite resulted in a loss of 10 pounds in one month, which is good for me.

Sorry you are having trouble accessing assessment! A couple of ideas--

1. Is there a university within striking distance that has a clinical psychology PhD program? Such programs almost always have a teaching clinic, and assessment is usually a big part of what they offer, since all the students have to be trained in assessment.They may not take insurance but often have a sliding scale. 

2. Many psychologists these days see Telehealth patients. Psychology Today, while not recommended as a publication, has a provider database where you can filter by specialty, insurance, etc. You can see if there are any neuropsychologists (the specialty you want for ASD and ADHD assessment) who do Telehealth and accept your insurance.

I tried option 1 at a university and that was one of the distant places with a long wait.  Option 2 seems workable but I do so much better talking to people in person, face to face, which is another reason why I suspect being on the spectrum.

[little bongo]

I waited a long time for my appointments as well (about a year altogether). And I agree that while medication is often helpful (and even necessary), there's a tendency to jump right to the medication while ignoring additional or alternative kinds of help.

Also was on buspirone for a while--I got lucky in that there was no nausea, but it didn't seem to do much else, either.

Thanks for the good wishes from everybody, and the best of luck to the rest of us in the club.

[Puget]

I called 6 places a week ago after I got in trouble again for something I said at work.  I figured that I could gain some ADA protection.  This region is loaded with mental health facilities.  Well, it turns out that they are for addiction, counseling and handing out pills.  I would have to travel 90 miles away and wait 3 to 9 months for an appointment.  I want to get tested for autism, adult ADHD and anxiety.  One local office told me "we don't do the testing but afterwards you can some here to get your pills refilled".  To me that encapsulates healthcare in America, just take some pills.  Last June I was give Busiprone for anxiety but stopped after one week when the nausea kicked in, although the loss of appetite resulted in a loss of 10 pounds in one month, which is good for me.

Sorry you are having trouble accessing assessment! A couple of ideas--

1. Is there a university within striking distance that has a clinical psychology PhD program? Such programs almost always have a teaching clinic, and assessment is usually a big part of what they offer, since all the students have to be trained in assessment.They may not take insurance but often have a sliding scale. 

2. Many psychologists these days see Telehealth patients. Psychology Today, while not recommended as a publication, has a provider database where you can filter by specialty, insurance, etc. You can see if there are any neuropsychologists (the specialty you want for ASD and ADHD assessment) who do Telehealth and accept your insurance.

I tried option 1 at a university and that was one of the distant places with a long wait.  Option 2 seems workable but I do so much better talking to people in person, face to face, which is another reason why I suspect being on the spectrum.

For assessment purposes, it's actually a good thing for the assessor to see how you function in your non-ideal mode of interaction, especially if video conferencing and other non-face to face interaction is something you have to do with work and are struggling with. So I wouldn't write off the telehealth option, but you may want to just go ahead and get on the waitlist for the university clinic in the meantime, and if you have any schedule flexibility you can let them know you'd like to informed about slots that open up due to cancelations.

[Caracal]

I called 6 places a week ago after I got in trouble again for something I said at work.  I figured that I could gain some ADA protection.  This region is loaded with mental health facilities.  Well, it turns out that they are for addiction, counseling and handing out pills.  I would have to travel 90 miles away and wait 3 to 9 months for an appointment.  I want to get tested for autism, adult ADHD and anxiety.  One local office told me "we don't do the testing but afterwards you can some here to get your pills refilled".  To me that encapsulates healthcare in America, just take some pills.  Last June I was give Busiprone for anxiety but stopped after one week when the nausea kicked in, although the loss of appetite resulted in a loss of 10 pounds in one month, which is good for me.

Apologies if this is stuff you've tried, but you might be able to separate out some of the issues here.

You probably do need a formal diagnosis to get any kind of work accommodations. Obviously, that's frustrating and it sounds like you would also find a diagnosis helpful in other ways. However, you don't need the diagnosis to get some help managing things. A psychiatrist can prescribe you a stimulant for ADHD if they thin it would be helpful based on your description of your symptoms. They also can figure out what might work in terms of the anxiety. Not sure if you've tried other anxiety drugs before, but if something causes unpleasant side effects, there are usually other options-like any of a number of SSRIs.

If you're not seeing a therapist, a good one would probably also be helpful. They also can't diagnose you, but if you find someone with some expertise in neuro-divergent stuff, they can certainly help you figure out some ways to navigate things regardless of whether you meet the full criteria for autism or ADHD or whatever else.