suggestions and help for us as we try to help our son

[kfeusse]

I am coming back to the hive looking for some more advice about my most likely mildly autistic son. (age 19)

He spent a year at a small, private college and it didn't end very well.  His grades were poor and he didn't make any friends.  Covid, with all that came with it, most likely played a part in his troubles...but not completely.

My husband and I had a heart to heart talk with DS this afternoon.  He doesn't want to go back to college.  He thinks he wants to pursue looking at a job as a bowling pro (not a pro-bowler).  He doesn't know if this is going to take him anywhere and either do we...but I honestly do not see him going for any kind of college degree at this point.  He isn't the strongest academically and so this is where we are. 

We want to get him evaluated for mild ASD but aren't sure where to go.  Do we just go to our GP or seek out a specialist.  Our insurance allows us to skip the GP if we want to. 

I also wanted to share with you all some of the behaviors we are seeing....so maybe you can not only affirm our suspicions, but  also maybe help us know what a good next step might be for DS, since college doesn't seem to be in his near future.

The things we see now are (that he also had as a kid) are sensory issues....he hates certain touches (his back, feet and parts of his face are the worst).  He can't stand to have a table cloth touch his leg...even if he has pants on (he always folds it under). 

He is also obsessed with anything sports...especially Michigan sports...he remembers stats and names, games and scores, and all sorts of little details.  He is also really good at remembering dates and events...and certain little details about things that we all have totally forgotten.  We always have said if we can't remember something, to ask DS....and nearly every time he remembers. At first we doubted him....until we learned that he was nearly always correct. 

He is a keyboardist and would play and replay the same phrase or line of a piece of music over and over again...not to learn, but just to do it and listen to it.

Any kind of change is hard for him, although he is a lot better at dealing with that than he used to be.  It used to throw him for a major loop.  

He used to over react with his emotions...and he still does that sometimes...like when something is funny, he laughs really loud....even when it's inappropriate.  He used to get angry easily or scream loudly when he got hurt (even a little bit) and he has stopped doing that. 

He used to constantly need to be tapping his foot, or a pencil or his finger....and he never even realized he was doing that....he doesn't do that as much any more. But still does sometimes. 

He always had the need to have some things (but not everything) in a certain order...his room is a disaster, but then when he is doing something, there is always a specific order in which he wants it done it. 

He used to be really sensitive to strong smells....and would over react to them.  

He has trouble making friends.  He really has nobody, except his cousin who he rooms with who actually has been diagnosed with Aspergers since he was 5. (Autism runs in my family...I have a cousin who has a more severe autism son, and I question whether one of my brothers and even my father might be mildly autistic. )

I am sure there are more examples, but I am just not thinking about them right now.

Thanks so much for all of your thoughts and ideas.

 

 

[ktgrok]

Yes, ASD seems likely.

But I have to ask...what is a bowling pro? Is it like a golf pro - someone who give lessons and such?

[saraha]

He sounds very similar to my aspie. He works in a library full time and loves it. He does not have any friends, but he gets along well with his co workers. His differences are obvious to most people.

if not a bowling pro(does he have an in with this?) what about a sports memorabilia store? Or working with an antique dealer or auctioneer? Sports memorabilia can be big in some areas.

eta: how do you think diagnosis will help him? Not trying to be snarky, I just can’t think of another way to phrase it. We got our oldest diagnosed young, but he needed to know why he was different. Our daughter (even though we could tell through experience) we waited til she was older and more able to “handle it” she even said herself she is glad she didn’t know until she was a young adult. She had a very happy childhood.

Edited June 1, 2021 by saraha

[East Coast Sue]

Yes, sounds like ASD. How is he with reciprocal conversation? I think you’d get a diagnosis; however, how does getting the diagnosis help? Serious question. Does getting the diagnosis open up resources- then definitely pursue a diagnosis. If there isn’t a definitive purpose for confirming the diagnosis, then I’d just move forward as if you’ve been given confirmation. I say this b/c he’s not a student and it sounds like he won’t return to school so I’m not sure if you need a professional diagnosis.  
 

Good luck. My ds was diagnosed recently, age 15. 

[kfeusse]

12 minutes ago, ktgrok said:

Yes, ASD seems likely.

But I have to ask...what is a bowling pro? Is it like a golf pro - someone who give lessons and such?

Yes, that is exactly what a bowling pro is.  

[kfeusse]

I don't know if an official diagnosis will help.  You are right to ask that.... and I appreciate it.  Maybe we don't need that.  We are just grasping at straws on how to best help him move forward. 

Thanks for being bold and asking!!!

[kfeusse]

As far as conversation... he does fairly well.  Especially when he is taking about something important to him...aka sports.

Also some one asked about whether he had an in to the bowling pro idea...unfortunately no,  but he doesn't want that to stop him.  

[Indigo Blue]

I think if he is open to getting diagnosed and you have the means, then why not? It may not help him in getting any type of support, but ...you will know. He will know. It can take a weight off and be a relief. It could help him to understand himself better.
 

I have long thought one of my sons is mildly autistic as well. 

[Alicia64]

I just wanted to suggest that he might want to take classes at the local two-year technical college.

Some of the technical degrees might appeal to him.

And thank you! Now I know why ds hates it when I touch his back.

Thanks again!

 

[catz]

I think getting a diagnosis for an adult like this is a good idea if you think he might EVER benefit from any kind of services.  Like he  hasn't been employed or self supporting to this point, correct?  I think it's just better to have hat diagnosis and possible resources bookmarked just in case.  He may find a great path for him and not ever need them.  But if it gets to be an emergency situation, those gears tend to turn slowly and it's better to have some footings in place.  Better safe than sorry, you don't know what is coming down the road.  Going through testing with someone highly qualified locally may help give you roads to follow and greater insight to what might be a good fit.  

[East Coast Sue]

So, perhaps the purpose of an evaluation is to qualify for benefits? In my state, we have a specific program for those with an official autism diagnosis. It provides assistance with employment services, disability benefits, and other types of career and financial coaching. We’re just getting started with these services. Many of the clients who use the services are 20-25 years old. It can take a while to work through the qualification process so getting an evaluation could be beneficial. My son really struggled with the evaluation, it was very uncomfortable (he was asked about his friendships, what made him anxious, did he feel different from others...). The person who did the testing was absolutely amazing. He made it as easy as possible and went out of his way to connect with my son with compassion and kindness. It’s just that the process/questions hit on lots of his areas of lagging skills. He’s very bright, but also he’s on the spectrum and he struggles a lot.

[Pawz4me]

I’d have psycho educational testing done by a clinical psychologist. They can diagnose autism and at the same time check for any learning disabilities and other potentially co-occurring things like ADHD and anxiety. And if he ever wants to go back to college having that info would help if he wanted to seek any accommodations. 

[Terabith]

I would pursue a diagnosis, and I would seriously consider talking to the Department of Vocational Rehab folks.

[AmandaVT]

Often an ASD diagnosis opens the door to services, including a job coach. 

You may be asked to fill out a questionnaire like the ASRS. You can see types of questions they may ask in the sample report:

https://documents.acer.org/ASRS-Interpretive-Report-Teacher-6-18-Years.pdf

 

 

[saraha]

It’s interesting what is available in different states. My aspie/high functioning autism kids don’t get any support. Not in college, not with services. Neither drive, but they are “too high functioning “

[Pawz4me]

4 minutes ago, saraha said:

It’s interesting what is available in different states. My aspie/high functioning autism kids don’t get any support. Not in college, not with services. Neither drive, but they are “too high functioning “

I don’t think any services are available here for Aspies/ASD-1. But if there’s anything else going on like a specific LD, ADHD or anxiety—those would probably enable him to qualify for some accommodations if he ever wanted to go back to college. 

[PeterPan]

2 hours ago, kfeusse said:

He has trouble making friends. 

 

1 hour ago, kfeusse said:

As far as conversation... he does fairly well.

You do see that these two don't flow, right? 

It's safe to assume he's on the spectrum.

1 hour ago, kfeusse said:

Especially when he is taking about something important to him...aka sports.

So then his job needs to be in this. Is there a bowling alley that is hiring for ANY position? Is there any type of sports company (putt putt, whatever) that has an entry level job he could go into? Until you get the conversation and social skills stuff improved, he may have trouble holding a job. So at this point *any* job would be a start and help him work on work skills. Unfortunately, employment levels don't go up with IQ in autism. 

Since the diagnosis is so obvious, what you might do is work backwards and first figure out who you want to help him. 

-OT for the sensory issues and to raise his self awareness (interoception)

-SLP for the conversation and social thinking

-job skills coach

These are different lengths of time. He may have some retained reflexes causing the sensory problems, and those are a 1-2 month fix. The interoception is also a straightforward thing where he could make dramatic progress in 8 weeks with an OT. The social thinking, conversation skills, and job coaching and longer term. 

Sometimes in a big city you'll find a service, a company that provides these services. You're looking for something aimed at adults with disabilities. He may also have some ADHD going on to explain some of the more pesky repetitive behaviors. It might be that some ADHD meds would help smooth that out and help him *receive* the good instruction from the others. 

 

[kfeusse]

Wow.... you guys have come through again.  I fear,  because we live in rural Nebraska, I might not be able to find the help he needs.  First,  I don't know what the rules are in Nebraska and 2 we are 3 hours from omaha and 2.5 hours from Lincoln.  So I don't know what options we will have.  Might anybody here know? Thanks so much for all of your help. The hive is the best. 

[PeterPan]

You can get an OT to work with him via tele. You can get social skills work and conversation via tele. And if your insurance covers SLP services and you get it qualified, well then you have funding, boom.

There's a FB group for Interoception run by Kelly Mahler, and you might look there for someone to do the OT stuff with him. 

[kfeusse]

Thanks I will look into all of this.  Thanks. 

[PeterPan]

If you want something you can do while you wait, Social Thinking.com has some book lists. You could try their teen lists and see if your library system can get them. 

https://www.socialthinking.com/Products#sort=%40fin%20ascending&f:age=[Young%20Adult]

[kfeusse]

51 minutes ago, PeterPan said:

You can get an OT to work with him via tele. You can get social skills work and conversation via tele. And if your insurance covers SLP services and you get it qualified, well then you have funding, boom.

There's a FB group for Interoception run by Kelly Mahler, and you might look there for someone to do the OT stuff with him. 

I wish that FB group wasn't a public group. I may lurk, but I won't post. Are there any private groups you would also recommend?

[VickiMNE]

Not in Nebraska, and technically not even in the States (expat living overseas currently), but I just wanted to encourage you wrt an Aspie son.  Ours is now 29 and I am amazed beyond belief where he is at--happy in his own skin/life, working, pursuing activities that bring pleasure, a great (if mostly silent 😉 ) person to be around.  

One thing I can say now, is that while at age 19 he was very immature (like a young teen--needing lots of scaffolding), he *did* continue to mature and mature and mature.   I do think it is important to not let a diagnosis *limit* one's options; rather, use it to figure out ways to accomplish what he wants to accomplish....

[RootAnn]

I don't know what might be helpful but here are some links for Nebraska:

https://autismnebraska.org/state/

https://autismcenterofnebraska.org/

https://dhhs.ne.gov/Pages/DD-Resources.aspx

[kfeusse]

I feel sort of like maybe I was amiss by not sharing the ways our son is not autistic.  I know other autistic kids and our son doesn't have many of the common characteristics either.  (I am not tying to say he isn't on the spectrum, I totally think he is....)  

But our son is not clumsy...in fact just the opposite, he is very coordinated. 

He does not have robotic like language

He understands sarcasm and loves jokes and to joke around

He does enjoy talking to some people...even those he doesn't know...sometimes.  He doesn't clam up when people are around or he doesn't avoid social situations even if there might be a lot of people.  When he was little he was actually sort of "the class clown".   When he went to college, I thought for sure he would have a ton of friends right away...and we are sort of confused why that didn't happen.  Our son is actually more mature in many ways and one of the older kids in his class....he has never liked the silly things boys his age liked. 

He doesn't dominate conversations....but he does love talking about sports with those he knows also loves to talk about them.  On occasion he might go overboard and talk too much about it...but not most of the time.  

He can feel emotions....he is very sad about not having friends and feeling like a failure at school.  He also can tell when someone else is sad or hurt. 

He doesn't have any quirky motions or facial expressions that autistic kids often have. 

When on the phone there is give and take in the conversation. 

He is musical and understands music.  He is not a savant or anything close to that....but he plays trumpet very well and he likes the keyboard. 

So, I guess what I am saying is this....although my son does exhibit certain autistic traits, you would not know it by looking at him or even having a brief conversation with him.  Most people would be surprised if we told them...even in our church where we have been for over 20 years and they have watched him grow up.

So, how does that play out with a job or a career?  

Mostly, I think our son will not get a college degree because he does not like school.  He never really has.  He did well at home because we helped him.  When he went to college, he was on his own....and when he didn't like doing an assignment, he just didn't do it.  Writing comes hard to him.  

I was looking at the places available for help in our state (the links above) and it seems like those are mostly for people who can't live on their own or would need significant help....with basic living things...cooking, cleaning, driving etc.  Our son can do all of those things without problem.  

He just needs help with understanding how to figure out a job he loves and one that will pay the bills....

I just wanted to give you guys a well rounded picture of him and I apologize not doing that sooner.  

With that all being said, I am not sure if getting him diagnosed is necessary since we probably won't be looking for services...but I honestly don't know.  Maybe there is something out there that can help us...that isn't geared for people more on the spectrum than he is. 

Please keep talking to me and advising me.  This is all new territory for us and we just aren't sure what to do next. 

thanks. 

[saraha]

6 hours ago, VickiMNE said:

Not in Nebraska, and technically not even in the States (expat living overseas currently), but I just wanted to encourage you wrt an Aspie son.  Ours is now 29 and I am amazed beyond belief where he is at--happy in his own skin/life, working, pursuing activities that bring pleasure, a great (if mostly silent 😉 ) person to be around.  

One thing I can say now, is that while at age 19 he was very immature (like a young teen--needing lots of scaffolding), he *did* continue to mature and mature and mature.   I do think it is important to not let a diagnosis *limit* one's options; rather, use it to figure out ways to accomplish what he wants to accomplish....

This. Our 19yo aspie has a maturity level as my 16 year old neurotypical. Our 21 yo aspie has matured A LOT in the last year, mostly due to an outside job.

[TravelingChris]

10 hours ago, PeterPan said:

 

You do see that these two don't flow, right? 

It's safe to assume he's on the spectrum.

So then his job needs to be in this. Is there a bowling alley that is hiring for ANY position? Is there any type of sports company (putt putt, whatever) that has an entry level job he could go into? Until you get the conversation and social skills stuff improved, he may have trouble holding a job. So at this point *any* job would be a start and help him work on work skills. Unfortunately, employment levels don't go up with IQ in autism. 

Since the diagnosis is so obvious, what you might do is work backwards and first figure out who you want to help him. 

-OT for the sensory issues and to raise his self awareness (interoception)

-SLP for the conversation and social thinking

-job skills coach

These are different lengths of time. He may have some retained reflexes causing the sensory problems, and those are a 1-2 month fix. The interoception is also a straightforward thing where he could make dramatic progress in 8 weeks with an OT. The social thinking, conversation skills, and job coaching and longer term. 

Sometimes in a big city you'll find a service, a company that provides these services. You're looking for something aimed at adults with disabilities. He may also have some ADHD going on to explain some of the more pesky repetitive behaviors. It might be that some ADHD meds would help smooth that out and help him *receive* the good instruction from the others. 

 

Adhd is not repetitive behavior, OCD is and that is what really stood out to me.  OCD can also be treated with medications along with therapy but it is very different than ADHD>

[TravelingChris]

5 minutes ago, kfeusse said:

I feel sort of like maybe I was amiss by not sharing the ways our son is not autistic.  I know other autistic kids and our son doesn't have many of the common characteristics either.  (I am not tying to say he isn't on the spectrum, I totally think he is....)  

But our son is not clumsy...in fact just the opposite, he is very coordinated. 

He does not have robotic like language

He understands sarcasm and loves jokes and to joke around

He does enjoy talking to some people...even those he doesn't know...sometimes.  He doesn't clam up when people are around or he doesn't avoid social situations even if there might be a lot of people.  When he was little he was actually sort of "the class clown".   When he went to college, I thought for sure he would have a ton of friends right away...and we are sort of confused why that didn't happen.  Our son is actually more mature in many ways and one of the older kids in his class....he has never liked the silly things boys his age liked. 

He doesn't dominate conversations....but he does love talking about sports with those he knows also loves to talk about them.  On occasion he might go overboard and talk too much about it...but not most of the time.  

He can feel emotions....he is very sad about not having friends and feeling like a failure at school.  He also can tell when someone else is sad or hurt. 

He doesn't have any quirky motions or facial expressions that autistic kids often have. 

When on the phone there is give and take in the conversation. 

He is musical and understands music.  He is not a savant or anything close to that....but he plays trumpet very well and he likes the keyboard. 

So, I guess what I am saying is this....although my son does exhibit certain autistic traits, you would not know it by looking at him or even having a brief conversation with him.  Most people would be surprised if we told them...even in our church where we have been for over 20 years and they have watched him grow up.

So, how does that play out with a job or a career?  

Mostly, I think our son will not get a college degree because he does not like school.  He never really has.  He did well at home because we helped him.  When he went to college, he was on his own....and when he didn't like doing an assignment, he just didn't do it.  Writing comes hard to him.  

I was looking at the places available for help in our state (the links above) and it seems like those are mostly for people who can't live on their own or would need significant help....with basic living things...cooking, cleaning, driving etc.  Our son can do all of those things without problem.  

He just needs help with understanding how to figure out a job he loves and one that will pay the bills....

I just wanted to give you guys a well rounded picture of him and I apologize not doing that sooner.  

With that all being said, I am not sure if getting him diagnosed is necessary since we probably won't be looking for services...but I honestly don't know.  Maybe there is something out there that can help us...that isn't geared for people more on the spectrum than he is. 

Please keep talking to me and advising me.  This is all new territory for us and we just aren't sure what to do next. 

thanks. 

Okay, maybe he is Autistic but he really seems by your description to be OCD and have sensory issues too.

[kfeusse]

11 hours ago, Alicia64 said:

I just wanted to suggest that he might want to take classes at the local two-year technical college.

Some of the technical degrees might appeal to him.

And thank you! Now I know why ds hates it when I touch his back.

Thanks again!

 

does getting a tech degree require a bunch of gen ed classes?  that is where he really struggled....he hates to write and study for tests.  He has never tested well..the pressure gets to him I think.   I am not sure if a tech degree would make him happy....he isn't great with this hands (electrical or plumbing) 

And you are welcome,  My son has always hated certain touches...especially soft touches...like a gentle pat on the back..so we just avoid that....but he doesn't mind being slapped on the back by a fellow soccer player for example....because it's not a soft touch....

[kfeusse]

Sensory issues for sure....that we have known for a long time....OCD?  haven't give that much thought....again...his repetitive behavior isn't super obvious in most situations or to most people.  So, I am not sure. 

[pinball]

I want to add to those who mentioned the issue of maturity level being lower than the chronological age.

IME, this is accurate with certain issues, including autism. If you are seeing what you might consider a lack of maturity for the chronological age, ask yourself if this seems more typical of a younger person. If you can answer yes, and have almost always been able to answer yes in most cases...there is something going on.

It’s also helpful as a parent to put things in perspective, and reassuring. It’s not something I’d ever share with my child but knowing...this is typical for them, to be more like a 15 yo at this point rather than a 17yo.

i think if that gap, whatever you might think it is, 1 year, 2 years, etc...ever really widens, and your child seems stalled...that is always a red flag.

[PeterPan]

9 hours ago, kfeusse said:

I wish that FB group wasn't a public group

If you write Kelly back channel, she will post for you anonymously or make a generic post about looking for someone in x place or who does tele. 

 

13 hours ago, kfeusse said:

He used to constantly need to be tapping his foot, or a pencil or his finger....and he never even realized he was doing that....he doesn't do that as much any more. But still does sometimes. 

This is basic ADHD fidgeting. https://chadd.org/attention-article/harness-fidgeting-to-improve-focus/  

Now he doubtless also has some behaviors that move into repetitive. It's part of the criteria for autism https://www.autismspeaks.org/autism-diagnosis-criteria-dsm-5  but that's going to be a step up. Behavior in autism usually has a *function*. https://cornerstoneautismcenter.com/aba-therapy/aba-101-the-functions-of-behavior/#:~:text=The%20four%20functions%20of%20behavior,attention%20and%20access%20to%20tangibles.  There's a link to get you started on that. You're really teasing apart very subtle differences at that point. But I'm pointing out that there's *strong* overlap between ADHD and ASD (often comorbid and severe ADHD morphs into ASD clinically) and that the *simplest* explanation for that particular thing you described is that there is *also* ADHD going on. So evals, medications, or even just focused ways to fidget as the article describes. People vary. I keep things in my pocket that I roll, very discrete. My dd actually wears cute fidget bracelets, etc. My ds on the other hand (ASD2) doesn't know what to do with fidgets. He'll just throw them, lol.

37 minutes ago, kfeusse said:

OCD?  haven't give that much thought....again...his repetitive behavior isn't super obvious in most situations or to most people.

Yes, the most global explanation (autism) would include repetitive behaviors. They're going to diagnose anxiety separately, and then as the anxiety ticks up eventually the behaviors move into an additional diagnosis of OCD. So for instance on me, I have my overall diagnosis and then I have things that tick up to the point where, depending on who you talk with or what we're emphasizing, you could add in some more labels. But that's how you're going to think through it. If you cherry pick off just the anxiety or just the ADHD or whatever and miss the global, he still in't getting the help he needs. You want the overall picture AND all these additional comorbid descriptions. 

To me, and this is just me and not to disagree, I think if you look at the criteria for OCD you're going to see behaviors driven by anxiety and they have an element of distress. https://www.ncbi.nlm.nih.gov/books/NBK519704/table/ch3.t13/  

43 minutes ago, kfeusse said:

does getting a tech degree require a bunch of gen ed classes?  that is where he really struggled....he hates to write and study for tests.  He has never tested well..the pressure gets to him I think. 

Then DON'T DO IT. There is zero need for this. https://www.ocali.org/project/tg_aata/page/elsa_documents  Here is the ELSA, which you can use to inventory his employability and whether he has skill gaps. Your reason for him going to college presumably was to secure his future, to help him be employable. So help him be employable. Go through the ELSA fill in any holes, get him evals, get him treatment for the ADHD, anxiety, etc., get him therapy for social skills, self awareness, and the sensory issues, and help him get and KEEP a job.

Focus on the important things. Underemployment is 80% in the autism world, irrespective of IQ. Having a degree, even a tech certification, does not secure his future or mean he will be employable. The forms I linked here are important basic skills for employability, and that's what you want to see. Those social skills, the issues with conversation and being able to work with his peers are going to matter.

You are not going to change who he is, what he's into, etc. If his perseverative interest is sports, then you're going to want to work within that to find him a place. He can work a desk taking tickets, sweep, stock shelves, work in a factory making golf clubs, whatever. He needs a place.

When you're saying "pressure" that can be processing speed (needing more time!) and it can also be anxiety. Those things are going to affect his employability. So he needs something that doesn't require him to be fast and he may need breaks or need to work less hours. If he has trouble being self aware, he may need OT to work on self awareness so he can ask for those breaks and take them before he becomes flustered.

https://www.kelly-mahler.com/what-is-interoception/

It can be challenging to find an employer ready to work with a person who needs these supports. My dh really struggled as an employer to understand how our ds could work and what this was going to look like. There's a learning curve to realizing ok, this is what he can do, these are the breaks he needs, he may respond this way or that or not self advocate well, etc. Now if your ds' support level is 1, that's easier to get to than our ds' 2. But still it can be a challenge.  

54 minutes ago, kfeusse said:

My son has always hated certain touches...especially soft touches...like a gentle pat on the back..so we just avoid that....but he doesn't mind being slapped on the back by a fellow soccer player for example....because it's not a soft touch....

As you're looking for an OT, see if you can find someone who both understands Interoception *and* can work on retained reflexes. The neonatal/primitive/infant reflexes help us do things like turn in the birth canal, learn to suckle, learn to roll over, crawl/walk, etc. Yes, there is a reflex (the spinal galant) that is on the back, and when someone has that reflex retained, because it's on the back, touching the back lightly sets it off and is exquisitely uncomfortable. Ironically, light brushing on the back is also the way you integrate it. https://www.brmtusa.com/what-are-reflexes  

You can google for tests for each reflex and find videos on youtube. I used to always recommend Pyramid of Potential, because the PT we used successfully for our reflex work used that system. However that site may be down, sigh. 

So then we also talk about being hypo or hyper responsive to sensory. A person can be mixed, but I think if you set aside the light touching (which is probably reflexes) and think about how he functions in general, you'll notice patterns. How is he with pain? For instance, he might cut himself and not realize it, not respond when hit very hard, not ask for care for a serious injury. My ds and I are hyporesponsive, so we tend to roll like that. I had the light touch thing and I will tell you it's pretty visceral, like I might actually hit you. It's better now, but I got a ton of massage, which I think integrated some of my retained reflexes. Easier just to do the exercises for them, haha. You do them about 40 days and they'll integrate and be gone. Easy solution and free once you know what exercises you need. 

1 hour ago, kfeusse said:

So, I guess what I am saying is this....although my son does exhibit certain autistic traits, you would not know it by looking at him or even having a brief conversation with him. 

I agree with you that the way the DSM has lumped together support levels and all the ways people get to autism is NOT HELPFUL. If you take someone with an idiopathic route into autism, a support level of 3, someone with ID, someone severely nonverbal, and you try to use the same label socially on a person of average or higher IQ who mainstreams, someone who maybe has more of that genetic neurodiversity path where the mix is pretty normal in their family, it just doesn't feel the same.

So I hear you, I agree with you. And there are people (adults) who are very "out" about their autism and adults who don't want to be, precisely for this reason, because it doesn't work. 

But I can tell you that if I hang with a person with ASD3, a lot makes sense to me about why I or my ds do things. And a lot of it is little stuff that is very subtle. Like I was watching this gentleman who needed a physical prompt to be able to initiate movement to play piano. He was almost catatonic, definitely support level 3, and I identified with this because I know within myself my own intransigence, how hard it is sometimes to *initiate*. And I watched him and knew the similarities.

So I think it discounts someone's inner experience to want them to be something else or to say it's not happening because it's not as glaringly obvious as a support level 3 person. And I think you know that you want to do the opposite, that you want to help him explore, voice, and validate his inner experience. Kelly Mahler uses that term a lot now and I think it's so healthy and spot on. 

The DSM is a fallible tool to try to put words to someone's inner experience. We don't fit into categories but rather the words need to wrap around us, to try to express as best they can what we are experiencing. If it *helps* to call it something and add another label and that opens doors, then add the label. So I don't know if he'd get to OCD, but you *at least* have several other labels, starting with the global one (ASD) and working out. 

1 hour ago, kfeusse said:

I was looking at the places available for help in our state (the links above) and it seems like those are mostly for people who can't live on their own or would need significant help....with basic living things...cooking, cleaning, driving etc.  Our son can do all of those things without problem.  

So yes, it is easy for a support level 1 person to fall through the cracks. My ds is support level 2, and because he has language challenges and SLDs, he *does* qualify through the county board. And given the way our state does it (needing to qualify under multiple things to have enough to qualify for services) I can see why your ds is not likely to qualify. It doesn't mean you should not TRY or get him diagnosed and go through the paperwork as he MIGHT. However that does happen, yes. 

And unfortunately, not qualifying with the county does NOT mean employability or that things will go well, only that he might fall through the cracks. You may have to hire help privately. But getting the right words and being humble enough to say that the support level 1 is a variant of the 2 and 3 and that some of the same things will apply will help. He just has a higher ceiling because of his cognitive. He will have the ability to GROW and learn and use the good therapy you get him and do something with it. My ds is like this. They hope good things for him, even with his ASD2, because his cognitive is so good. We don't expect him to work full time, because he can't handle that stress. But we expect him to continue to grow and be able to apply good instruction and be able to have a good life.

 

[PeterPan]

1 hour ago, kfeusse said:

He just needs help with understanding how to figure out a job he loves and one that will pay the bills....

You might modify this a bit. He may need some work to have skills for employability and support to keep a job. He's probably going to have a learning curve when he goes into employment because it's going to bring social complexities he has not had to deal with. He may not have those skills yet.

Rather than thinking of his first job as needing a career, you might think of it as a learning opportunity and a stepping stone. Rather than telling him the job needs to be something he wants, maybe just help him get a job he can tolerate so he can build work skills. 

So he likes sports, help him find a job that somehow connects to sports. Not a career, just a JOB. A job that does not stress him out or require things he's not good at. So if right now he's weak at social complexities, anything requiring speed, etc.., then look for a job somehow connected to sports that skirts those issues. Does he have any thing he's *good* at or a skill that he could bring to work? Like he shows up on time? He's very consistent? He's able to do a repetitive task without being bored? Or he's good at counting money? He's good with pattern matching? Just be honest and inventory. Definitely consider whether he's good with repetitive. He may find repetitive tasks calming. Or he might not, lol. But he might.

1 hour ago, kfeusse said:

I am not sure if getting him diagnosed is necessary since we probably won't be looking for services...

I would encourage you to go ahead and get him fully evaled and diagnosed NOW, because it's the most protective thing you can do for him. He's going to need explanations and the right words at some point, and he will probably have these questions himself at some point. Right now he's covered on your insurance, so it's the best time to get it done. And you might find that if you can connect him via tele with good therapists that you might be *very glad* you went through the hassle of finding the services and setting it up.

It's one of the challenges, when behaviors are very normal in your home, when this is pretty much how the family tree runs, to understand that some people aren't going to roll quite as well, that maybe finally it's time. It's not always reasonable to bank and assume that just because Mom, Pops, etc. got by that now, in this next generation, Junior is going to. It seems like every generation it gets a little worse, a little more challenging. And his mix is enough that he's having trouble self advocating and finding his way. Why didn't he push back against college?? Think about that. If he doesn't know his own mind enough to push back against a placement in college that he didn't want, didn't like, that wasn't working toward his goals, how is he confident enough to go into the work force and hold a job and navigate social complexities and deal with bullies?? 

Also, there are such GOOD interventions now. He has opportunities now to learn things about himself and grow and do better in ways that he wouldn't have even 10 years ago. This is stuff he will WANT when he gets old enough and mature enough to realize. Do you realize how many ADULTS come onto the Interoception facebook group wanting help? ADULTS want to understand themselves better and they want to have the right words and they want to be able to self advocate and say what they need.

So doing evals now is giving him that GIFT. Getting interventions now is giving him the GIFT of self awareness, self advocacy, and self determination. You want to help him, but even people with disabilities need to be able to determine for THEMSELVES what they like, what they want, what they choose. With support, with guidance, but for themselves. And to get there, he needs evals and he needs some interventions.

[PeterPan]

10 hours ago, kfeusse said:

Are there any private groups you would also recommend?

You might look for is a support group specific to your state or region. Honestly, I've never been to (Nebraska?) so I don't know much to help you. But look on FB for autism support groups in that part of the country or your state and see what pops up. You need to network and you need some parent friends to bounce ideas around. There might be a support group on FB for a big city in your state, so you could try that. 

And again, feel free to message Kelly through the FB group and ask her if she could do an anonymous post for you. People do this pretty frequently, with questions and queeries for help in their state. I'm sure she'll try to help you.

That's interesting that he was rooming with his cousin. I think we just have to meet people where they are. If the cousin is getting by with his mix and your ds needs some support, that's ok! I think when he gets some good intervention, especially on things like the reflexes, interoception/self awareness, evals to understand what his body and brain are doing, etc., he'll be glad. It may be a learning process for your whole family. It's ok to be overwhelmed and it's ok to take it one step at a time. It takes time to go through this journey and connect dots and understand yourself better and self advocate better. But that's where success is. 

 

 

[PeterPan]

Oh man, I could ramble about this. You realize how many adults here WISH they could have had evals and the RIGHT WORDS when they were much younger? Wish we could have had in our teens/20s good interventions like are available now? Wish we could have been spared the pain, the mistakes of wrong labels, accusations, guilt tripping, blame shifting, people saying we are bad, don't try hard enough, etc.?

And maybe it's a catch 22. If you were diagnosed 20 years ago and feel like your intervention was not affirming and was harmful, that's bad too. 

But I think if you say RIGHT NOW would you rather have your diagnosis and information for self awareness and access to these affirming, informative, empowering interventions that allow you to understand yourself and others, most people here who've been down that road (spectrum, OCD, anxiety, ADHD, any label) are going to say they want the information. 

[Mrs Tiggywinkle]

13 hours ago, saraha said:

It’s interesting what is available in different states. My aspie/high functioning autism kids don’t get any support. Not in college, not with services. Neither drive, but they are “too high functioning “

Same here. My high functioning 11 year old, who is only high functioning on the Vineland and in controlled situations, has been routinely turned down for any services. It’s beyond frustrating.

[PeterPan]

5 minutes ago, Mrs Tiggywinkle said:

Same here. My high functioning 11 year old, who is only high functioning on the Vineland and in controlled situations, has been routinely turned down for any services. It’s beyond frustrating.

And as a total aside, I'm not sure mental health is one of the ways you qualify with our county. Like they have a bunch of areas they look at (language, adaptive living, academics, etc. etc.) and that's really curious if mental health, which of course drives so much else, is not even on there. I guess they figure the oh so awesome psychiatry world (snort) will solve that and it doesn't have to be.

I guess they figure it gets there indirectly with the capacity for work and independent living, sigh. Dunno.

They haven't pushed back on us yet, but I think he made a strong impression the first time they came out, haha. He talked to them in echolalia for 15 minutes. No joke. And with covid they were kinda moving people on through. So probably next time.

Edited June 1, 2021 by PeterPan

[Mrs Tiggywinkle]

1 minute ago, PeterPan said:

And as a total aside, I'm not sure mental health is one of the ways you qualify with our county. Like they have 8 areas they look at (language, adaptive living, academics, etc. etc.) and that's really curious if mental health, which of course drives so much else, is not even on there. I guess they figure the oh so awesome psychiatry world (snort) will solve that and it doesn't have to be.

Mental health is under a whole different department here.  There’s OPWDD which is the department of developmental disabilities and has a Medicaid waiver with programs, but if you’re IQ is above 70 and you’re verbal it’s almost impossible to get. Any mental health diagnosis and Medicaid waiver services fall under OMH, but you have to have a diagnosis of “severe and persistent mental illness.”  NY is just difficult. If you’re not in need of a psychiatric hospital or a developmental disabilities group home, the waivers just aren’t there.

[Alicia64]

2 hours ago, kfeusse said:

does getting a tech degree require a bunch of gen ed classes?  that is where he really struggled....he hates to write and study for tests.  He has never tested well..the pressure gets to him I think.   I am not sure if a tech degree would make him happy....he isn't great with this hands (electrical or plumbing) 

And you are welcome,  My son has always hated certain touches...especially soft touches...like a gentle pat on the back..so we just avoid that....but he doesn't mind being slapped on the back by a fellow soccer player for example....because it's not a soft touch....

I don't know how it works for the various subject degrees. The subjects really range from welding to nursing to becoming an EMT.

It might be worth looking into if you live close enough to one.

❤️

[PeterPan]

Just now, Mrs Tiggywinkle said:

If you’re not in need of a psychiatric hospital or a developmental disabilities group home, the waivers just aren’t there.

And it's sad, because the higher IQ kids have so much potential to respond to the interventions that they can't get the funding to get.

Took me 3 years to get him on our state's autism scholarship, and now I'm like a banshee woman about it. It's the only way I make stuff happening and why he's doing so well. Well that and genetics and the grace of God and lots of supplements that are actually (mostly) working.

It's hard. Especially if they can slip through the cracks and mask.

I guess that's another term op can think about, masking. When a person has challenges but strengths, they will "mask" and cover them up. It doesn't mean their inner experience is all honkey dory, and masking is stressful. 

[PeterPan]

3 minutes ago, Alicia64 said:

an EMT.

Trying to think about what certs there might be to work with *sports*. She said his thing is sports. Like there's sports massage, a PT *assistant*, and other certs. 

And that's a conversation they can have, whether he wants his area of strong interest to be connected to his job or a hobby. We talk with my ds about that, and my ds could go either way. We might be able to help him chain and use an area of interest to do some work, or some of his (two) interests may become hobbies and he just has a job. If it goes the latter, maybe he can split it and work his job 20, do the hobby 10, something like that.

[Mrs Tiggywinkle]

14 minutes ago, PeterPan said:

Trying to think about what certs there might be to work with *sports*. She said his thing is sports. Like there's sports massage, a PT *assistant*, and other certs. 

And that's a conversation they can have, whether he wants his area of strong interest to be connected to his job or a hobby. We talk with my ds about that, and my ds could go either way. We might be able to help him chain and use an area of interest to do some work, or some of his (two) interests may become hobbies and he just has a job. If it goes the latter, maybe he can split it and work his job 20, do the hobby 10, something like that.

If you live near a sports complex, even a second tier one, you can often find EMT jobs there.  For instance we hire people who only want to work our sort of professional hockey games, high school football, things like that.  I live a few minutes from a NASCAR track, and for years I worked full time there as a paramedic during racing season.  As an autistic person, I thought it was great.  Not a ton of interaction, I enjoyed watching the daily car clubs instruct and race, and I sat and read my books lol.  I still work football games almost every weekend during football season because I get paid to sit there and read. 

[TechWife]

If you think he might not be able to work full time or perhaps not at all, you will want a diagnosis sooner rather than later. This would be to his benefit if he decides at some point to apply for social security disability. There is much more involved in that process than getting a diagnosis, but a diagnosis prior to the time he decides to apply is imperative. 
 

[TechWife]

1 hour ago, PeterPan said:

You might modify this a bit. He may need some work to have skills for employability and support to keep a job. He's probably going to have a learning curve when he goes into employment because it's going to bring social complexities he has not had to deal with. He may not have those skills yet.

Rather than thinking of his first job as needing a career, you might think of it as a learning opportunity and a stepping stone. Rather than telling him the job needs to be something he wants, maybe just help him get a job he can tolerate so he can build work skills. 

So he likes sports, help him find a job that somehow connects to sports. Not a career, just a JOB. A job that does not stress him out or require things he's not good at. So if right now he's weak at social complexities, anything requiring speed, etc.., then look for a job somehow connected to sports that skirts those issues. Does he have any thing he's *good* at or a skill that he could bring to work? Like he shows up on time? He's very consistent? He's able to do a repetitive task without being bored? Or he's good at counting money? He's good with pattern matching? Just be honest and inventory. Definitely consider whether he's good with repetitive. He may find repetitive tasks calming. Or he might not, lol. But he might.

I would encourage you to go ahead and get him fully evaled and diagnosed NOW, because it's the most protective thing you can do for him. He's going to need explanations and the right words at some point, and he will probably have these questions himself at some point. Right now he's covered on your insurance, so it's the best time to get it done. And you might find that if you can connect him via tele with good therapists that you might be *very glad* you went through the hassle of finding the services and setting it up.

It's one of the challenges, when behaviors are very normal in your home, when this is pretty much how the family tree runs, to understand that some people aren't going to roll quite as well, that maybe finally it's time. It's not always reasonable to bank and assume that just because Mom, Pops, etc. got by that now, in this next generation, Junior is going to. It seems like every generation it gets a little worse, a little more challenging. And his mix is enough that he's having trouble self advocating and finding his way. Why didn't he push back against college?? Think about that. If he doesn't know his own mind enough to push back against a placement in college that he didn't want, didn't like, that wasn't working toward his goals, how is he confident enough to go into the work force and hold a job and navigate social complexities and deal with bullies?? 

Also, there are such GOOD interventions now. He has opportunities now to learn things about himself and grow and do better in ways that he wouldn't have even 10 years ago. This is stuff he will WANT when he gets old enough and mature enough to realize. Do you realize how many ADULTS come onto the Interoception facebook group wanting help? ADULTS want to understand themselves better and they want to have the right words and they want to be able to self advocate and say what they need.

So doing evals now is giving him that GIFT. Getting interventions now is giving him the GIFT of self awareness, self advocacy, and self determination. You want to help him, but even people with disabilities need to be able to determine for THEMSELVES what they like, what they want, what they choose. With support, with guidance, but for themselves. And to get there, he needs evals and he needs some interventions.

Yes. All of this.

[Catwoman]

36 minutes ago, PeterPan said:

Trying to think about what certs there might be to work with *sports*. She said his thing is sports. Like there's sports massage, a PT *assistant*, and other certs. 

And that's a conversation they can have, whether he wants his area of strong interest to be connected to his job or a hobby. We talk with my ds about that, and my ds could go either way. We might be able to help him chain and use an area of interest to do some work, or some of his (two) interests may become hobbies and he just has a job. If it goes the latter, maybe he can split it and work his job 20, do the hobby 10, something like that.

I like your idea of him getting basically any job that is available, as long as it’s in a field that interests him, because if he sees the people at work who have the “better” jobs, it might inspire him to go back to college and earn his degree (or further his education in some other way, like getting certifications or whatever,) because he would have a tangible goal in mind that he could work toward. Sometimes a specific end goal is the thing that it takes to motivate a kid to do things like taking the general ed classes he doesn’t enjoy; knowing that there is an actual purpose to doing those writing assignments (or whatever) can be very helpful. 

I’m not saying he needs a degree to be successful in life; I’m just saying I wouldn’t necessarily write off that possibility right now, while he’s still so young. And if he gets a diagnosis, he might be eligible for some extra help if he does eventually decide to return to school, as well.

[PeterPan]

nt

 

Edited June 1, 2021 by PeterPan

[TechWife]

6 minutes ago, Catwoman said:

I like your idea of him getting basically any job that is available, as long as it’s in a field that interests him, because if he sees the people at work who have the “better” jobs, it might inspire him to go back to college and earn his degree (or further his education in some other way, like getting certifications or whatever,) because he would have a tangible goal in mind that he could work toward. Sometimes a specific end goal is the thing that it takes to motivate a kid to do things like taking the general ed classes he doesn’t enjoy; knowing that there is an actual purpose to doing those writing assignments (or whatever) can be very helpful. 

I’m not saying he needs a degree to be successful in life; I’m just saying I wouldn’t necessarily write off that possibility right now, while he’s still so young. And if he gets a diagnosis, he might be eligible for some extra help if he does eventually decide to return to school, as well.

I wouldn’t even go there, honestly. One thing my ds has a problem with is long term thinking. It paralyzes him. If he isn’t able to complete step one, talking about step ten, which presently seems unattainable, means there is no use in doing step one because the end isn’t going to happen. My son has been home from college for three years now and only able to work one of those years. Just today we talked again about looking for a tech program that would help him qualify for some type of job that matches his interests. But today was the first time he said he needed help weeding through the possibilities because it’s overwhelming to him. We talked about the skills he would like to use, what he wants to learn more about and what type of work environment he thinks he would do better in. This has been a three year process. I am so excited that he has admitted he needs help and has agreed to me helping him look around for a program that will help him meet his goals. Before this, he just needed a job to work on job skills - like showing up on time, completing tasks, being around other people, etc.. College may benefit him again in the future, but now is what we need to focus on. We can’t get the cart before the horse - it will backfire. 

[Lawyer&Mom]

He absolutely sounds Autistic to me.  High IQ kids with lower support needs often fall apart for the first time in college.  All the scaffolding of high school, that you and he probably weren’t aware he needed, falls away and the deficits suddenly become more obvious.

It’s great that he’s conversational and able to use humor.  These are wonderful skills.  Unfortunately initiating and sustaining friendships requires a bunch more social skills on top of that.  I’m 41 and I’m still trying to figure out how to connect with friends. I either come on too strong, or I’m way too distant...  It’s work to find that happy medium that Neurotypicals somehow just intuit.

I would get him assessed.  Knowing why you struggle in certain situations is so important. And if the world doesn’t read you as Autistic, it can really help to have that piece of paper in your back pocket if only to silence your own doubts. 

[Jaybee]

I don't know if this would interest him, but the tech (or trade) schools mentioned above can up one's employability quite a bit. From my understanding, most trades involve some level of book work (in order to pass the trade standard testing required), but nothing at all like college classes. The emphasis is on hands-on. Locally, our trade/tech school has both high school (students go for part of the day) and adult tracks. My ds has dyslexia and gets very bored in regular classes. Tech has been a great encouragement for him. His tech teacher really helps prepare the students, from a portfolio, to test prep, to interview and job help, and more. Due to this, he has a great summer job that will help move him into a job after graduation with the same company. It pays well, too.

[PeterPan]

4 minutes ago, Lawyer&Mom said:

Unfortunately initiating and sustaining friendships requires a bunch more social skills on top of that. 

Absolutely. I'm reading this book right now https://www.aapcautismbooks.com/products/talk-with-me?_pos=1&_sid=671d48803&_ss=r  and it's blowing my might the amount of complexity that goes into conversation.