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Azzymom
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24 Sep 2021, 10:17 am

This is my first post. I have an adult son with Asperger's. Unfortunately, throughout his childhood his condition was misdiagnosed as ADHD, OCD, etc. We have felt pretty let down by the mental/behavioral health community including psychiatrists, psychologists and counselors. Now, at 27 years old, he seems completely lost. He plays video games all of the time (which he has done for years) and has become even more socially isolated. He has both anxiety and depression. He is still living with us and we are at a loss as to how to get him to be independent in the traditional ways (e.g., getting a job, living on his own). He has not been "officially" diagnosed with Asperger's, but we all (myself, my husband and my son) know that that is what it is. I could use advice and wisdom from any other parents who have or are struggling with a similar situation. Should I try to get him officially diagnosed (does that matter at his age)? I have tried to identify someone who specifically works with Asperger's, but have found that most therapists who say they do don't really do anything different. Maybe I need to go through an Autism-specific center or something...? I am also anticipating significant push-back from him given that he has been to a variety of counselors and not experienced any real results.



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24 Sep 2021, 10:28 am

Yes, the first thing you may need to do is have an appropriately-trained and licensed mental-health practitioner examine you son and render a diagnosis.  If your son is diagnosed with autism, you may then pursue assistance from autism support groups in your area.  If your son is diagnosed with something else, then the same course of action may be taken.  But what if the professional says your son does not have autism?  A second (or third) opinion may then be needed.


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DW_a_mom
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24 Sep 2021, 7:51 pm

A diagnosis will allow him to access any services that might be available for young adults, although such services are limited.

My son is 24 and launching with ASD is tough. My son does have a job that he is good at and really enjoys, but it is not a career job, does not offer benefits, and does not pay well enough to support him. The barriers to move from point A to point B have him depressed. He had never gotten depressed before. He tried connecting to a career job, he is good at what he does, but first career jobs take persistence and the ability to face a lot of rejection. He isn't made for that.

If the job he has hadn't fallen into his lap I could see the pure inertia of the situation pulling him into the trap your son is in.

This is tough for us to see because, until now, the world seemed to be watching out for him. My son is smart and talented, and has always had friends and respect. He got into a good university, did a year abroad, made a lot of friends and connections, and graduated exactly at the 4 year mark. He also has a girlfriend (they live together, both sets of parents helping with overhead), and she is delightful, but I sometimes worry that helping her with her overwhelming issues is part of what leaves him too depleted to deal with his own.

I don't want to derail the thread or switch attention; I'm just trying to relate to your situation and see what parallels could prove helpful.

In this pandemic world services have become more difficult to find, but I do know of services in my area that would be appropriate for someone like your son based on the little I know. I don't know what exists in your area. The problem may be that if your son is like mine, he might see himself as too functional for the services available.

Does he work with a therapist on the depression? We've been trying to get my son into therapy but everyone is backlogged right now.

My sister is trying to connect my son with a life coach. It is someone she knows and that is well attuned to ASD issues. I'm surprised that my son is willing, but he seems to be willing to give it a shot. That sort of thing normally costs money, however, and may not be an option for very many people.

I think the short term thing is to have an actionable plan. Anything. The idea is to get your son to try things out of his comfort zone, then sit down and evaluate them together. Making changes to increase the sense of independence and simply change the direction of momentum is one reason we encouraged our son to move with his girlfriend when the opportunity came up. But ... that big a change isn't really the right remedy; comes with too many new barriers. Baby steps.


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timf
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25 Sep 2021, 11:15 am

While many will recommend a diagnosis, I suggest that it may not be all that helpful. You have already gathered from experience the helpfulness one can expect from the medical industrial complex.

It sounds like from your post that you are not of the opinion that your son is disabled or incapable of ever living independently. In that case a diagnosis might be useful in gaining disability support and guiding him towards a life of institutional support.

If you have a conversation with your son about the future, you might be able to get him to acknowledge that he will at some time have to have developed skills for independent living. You might then get his to agree to various experiments for him to develop the skills he will need. You can then slowly help him to discover activities that he might find of interest that would draw him into the world of interaction.

You might invite him to attend a game convention with you or attend a bridge club or amateur radio meeting. There are all sorts of things to explore from horseback riding to roller skating. If you start with inviting him to join you, you may slowly begin to find things he might actually undertake on his own.

Getting a job, even part time, might be too high a hurdle for now. Just getting him moving may be the first step in a long process.



Azzymom
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28 Sep 2021, 12:27 pm

Thanks to everyone for their input. Hearing about your son, @DW_a_mom, makes me realize how seriously off track our son is. It sounds like you understood and responded earlier to your son's needs than we did. We were sent all over the place and never got clear direction.

When he was 2, I took him to the local children's hospital to have his hearing checked because he didn't look at us when we talked to him. They said, "Nope, his hearing's fine." Nothing about ASD.

When he was in elementary school and couldn't pay attention in class, we were told that he had ADHD.

When he was in 6th grade and said to me, "Sometimes when kids are talking on the bus, I don't understand what they mean" I had no understanding that that could be ASD.

When I talked to psychologists about how we couldn't get him to sleep throughout his entire childhood, how he had colic as a baby, night terrors as a toddler, couldn't transition from one activity to another without a meltdown, was so sensitive that the tag on the inside of his shirt would reduce him to tears, no one mentioned ASD. Not a single one.

One psychologist told us that to get him to go to school and stop playing computer games, we should take something away each time until there was nothing in his room but a mattress on the floor.

A psychiatrist told us that we should send him to military school.

And now he is so hopeless. He did have a job for a few years and even a girlfriend for about a year, but that was all 3-4 years ago. He has done almost nothing but play computer games for years. He lost his drivers license and so is stuck at home all of the time (except when we take him where he wants to go, which is rare). He is increasingly isolated and can become angry and volatile because he is so hopeless, projecting his anger at his dad and me. He knows that his life is not what he would want it to be, and has lost hope that he can be any different.

He is so smart and insightful, but seems to be withering before our eyes. I believe it has affected his mental health in a serious way. We are deeply concerned about him and now think we may need someone who understands both ASD and broader mental health issues.

I'm sorry for going on and on, but it has been so frustrating and we are so sad and afraid for him.



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28 Sep 2021, 1:20 pm

Hi and welcome.

My daughter is 24 and wasn't diagnosed until the last few years. In retrospect she had the red flags too, but I'm also autistic and I hadn't been diagnosed. I was a single mother from the time she was six months old. I had nothing to compare her with and she seemed just as normal as I was in terms of meltdowns, sensory issues, anxiety, etc. She had about ten different longterm clinical therapists over the years who diagnosed Separation Anxiety, General Anxiety, Attachment Disorder, Depression, etc but because she was identified Gifted in school they didn't seem to think she needed much more support.

In the past few years she was diagnosed HFA and CPTSD, and she's currently midway through a two-month ADHD assessment. (I am also diagnosed ADHD).

She ended up maxing out on her development about three years ago and is now home full-time because of a permanent physical disability which is taken more seriously than her emotional needs. She had to drop out of Uni and she isn't allowed to work because of Covid. She's immunocompromised. She broke up from her only relationship three years ago just like your son.

We take baby steps. She's taking a class online. She's published books. She keeps herself busy but I don't know if she'll ever be able to launch in the mainstream way. I'm perfectly content if she lives with me the rest of her life whether working part time, full time, or sometimes not at all. It's not that I'm setting the bar low for her. I just don't like the pressures of young adults needing to meet or match the benchmarks of their peers, or the benchmarks of generations past. She's developing confidence and skill at her own speed. She has a trusted therapist, and she has me.

For now that's about all I can do. I'm hopeful things will unfold over time but for now, it's nice to have her company.

It's a shame about your son's childhood teachers not catching on. He is not "off track" though. You did the best you could. You love him and he clearly loves you. Please don't beat yourself up about other people's lack of ability to diagnose what now seems so obvious.

Deep breaths, hang in there, and best wishes.



DW_a_mom
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28 Sep 2021, 11:02 pm

Never apologize for going “on and on.” Each word provides clues that a reader might be able to use to give you the right advice. You only need one reader to find the magic button.

We were extremely lucky with my son when he was a child. Without a school principal whose instinct proved to be right on, we could easily have circled through years of frustration. Preschool had been like that. Kindergarten had been like that. First grade started like that.

And then we found the key.

It makes a WORLD of difference. Everything in my son’s attitude changed, and everything in how people responded to his issues changed.

My son isn’t ahead for any reason other than someone else doing their job right. But all that advantage isn’t set in stone, I can see it slipping away as adult life beats on him.

Having someone understand my son and know how to help him turned things around when he was 7, and I feel we’re at a spot where we need that type of person again. You are in that spot, too. We need someone to enter their lives and suggest a path they can see as viable. Someone who can understand and validate their frustrations, while turning it into something actionable.

I’m still trying to connect my son with someone. I hope you can find that someone for your son.

Never give up.


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Azzymom
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30 Sep 2021, 2:55 pm

Thanks everyone for your support.



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03 Oct 2021, 12:00 am

My daughter has ASD but I couldn't get a diagnosis. So frustrating. She's young yet; we have time. In the meantime, I support her but I'm afraid her needs or hardships will soon surpass my ability to provide comfort or direction. So tough.

My sister-in-law had difficulties setting (caring, appropriate, productive) boundaries with her ASD-like son (college dropout), so we invited him to our place. I am Autistic and also failed to launch (college dropout who eventually completed it), so I set 5 goals for my nephew, house rules, etc. After six months I "motivated" him (monthly increasing rent) to wrap up and he achieved 4 of the goals --- I left him with one goal (health) to handle himself. When he completed #4 - a budget, I was internally ROTFLOL and externally taking it all very seriously: he did his budget with a crayon on waxed paper (at age 25). No joke. Was he trying to goad me or was that really his skill level? Ha! But by golly he did it and he was out the door! A few years later and he has retained every milestone: stable job, his own car (initial micro loan), and his own apartment.

My husband (not ASD) was addicted to online gaming at 30 --- I put my foot down (eventually) and he stopped (now he is outside as much as possible running or biking). I'm very caring and compassionate, but I can also be "heartless" when needed. My husband and kids know this. I'll give them (and myself) slack for so long, and then it's time. My ASD-like BFF returned to her parents' home after college; she pursued a higher degree so it wasn't as "painful". Both of us took at least five years "putzing" around (minimum wage or temporary jobs since we had our own apts) until we fell into our careers --- and when we did we stuck with them for over 20 years and have (finally) done well for ourselves. ---Come to think of it, I was homeless at exactly age 27. I've come far in two decades.

Many ASD folks need someone (non-disapproving) to simply be there to function and execute. I've asked my partner to simply sit by me when I have a hard thing to do. My ASD-like mom was recently avoiding tasks (watching videos on her phone all day instead), so I invited her to an hour a week to be on a video call together to do whatever thing she needs to do (and I do mine at the same time). It's working! She loves it. I expect soon she'll gain momentum and do these things herself. I'm told there is an app for this (executive function companion).

Good luck. I hope your son finishes his "incubation" period soon w/ or w/o outside help. I agree that necessity is the mother of invention. Life shouldn't be too comfortable. :wink: