What has helped?

[Poohbear]

My son was diagnosed HFA at 20 after failing to live independently at his first university. He is very intelligent and had high goals for post schooling. 5 years and 2 colleges later, he is struggling to get passing grades even with many accommodations from the school and the local dept. of Vocational Rehabilitation, even with a reduced load.

He is within a year or so of graduating. Without someone to check up on him, he seems to suffer from defeatist and depressive thoughts, even though he is taking ADD meds and antidepressants and seeing the college counseling service on his own. If he is dismissed after this quarter, he won’t have even have those services available, and will need to find someplace to live.

I can’t have him live with me because I have my home on the market, don’t have another house yet to move into, and I cannot go thru the fight to get him to keep his living space clean enough for prospective buyers to look at. He has so much difficulty making friends, has only a couple, and is reluctant to find someone to share living space with.

We have a close family relationship, and his dad and I are doing everything we can think of to help him. We live in the Spokane area of Washington state, and find that while there’s support and services for spectrum kids, there’s not much for young adults on the spectrum.....or for the parents of those young adults. So I am looking for any advice on what has helped others.

 

[the_tortoise]

For me to offer you any advice you would need to be much more specific with your question(s)....What has helped with what, exactly?

 

[Tom]

Maybe some may have suggestions but after reading your post nothing jumps out at me to recommend that you are not already doing. Its a complicated and lifelong condition. Improvements are possible but they tend not to happen very quickly. I understand you want him to live independently, but if he is unsuccessful you may have to let him continue to live with you. The stress and anxiety of facing homelessness won't make things any better for him I would think.

 

[Poohbear]

Do “Life Coach” hiring help? Is there a college which specializes in HIGH functioning adult support? What about group living?

 

[GadAbout]

Hi Poohbear. Welcome to the forum.

Probably, living independently is a more essential goal than getting a degree, which he might never use. I'm sorry to say one of my children was in college 6 years and never finished. She's on disability now and is semi-successful at living independently. Could your son take a medical leave of absence before the next semester, and work on those skills? It might be a part-time job and a room in a house, which you might subsidize, initially at least. Meanwhile have him help you (or you help him) with cooking, shopping, cleaning, getting to appointments on time, etc.

I have an HFA brother who had a nervous breakdown about when he was finishing college. He was briefly hospitalized and then lived in a "halfway house" (group home) for some months, finally went to grad school for a masters, then went back for a Ph.D. in electrical engineering. But I am convinced that without that breakdown - which was probably necessary - he would not have had these later accomplishments. He has been stably employed since the Ph.D. It's just that living independently was too much of a challenge for him after only living at home and then in a dorm all his life.

I will say, I believe young adults with autism need some structure, or they just float from one crisis to the next. A part-time job can be the structure. Has your son ever worked, in any capacity? It's a plus if he has. Some time and money spent on his special interest or general recreation is also important, to combat depression.

I hope this has been some help. Let us know what you think.

 

[Poohbear]

Its a complicated and lifelong condition. Improvements are possible but they tend not to happen very quickly.

Thanks. That’s what I am trying to get at. What improvements could be possible? The only improvement I have seen after these several years is that he recognizes that he “hit a wall” at some point and withdrew, but has not been able to recognize the cause before he hits that wall. A big part of the problem might be that he was diagnosed after childhood, because there was no reason to think he would have trouble until he left the support of home. But I can’t help but believe other people/families have had similar problems, I just haven’t met any.

 

[the_tortoise]

Do “Life Coach” hiring help?

Having someone available for advice, practical support, and emotional support can help.

I don't know what "life coaching" involves, but if you hired one you'd better be sure they know a lot about autism or there is a good chance they will have expectations and propose solutions that do not take his differences/disability into account.

If he does not do well living with others than group living would not be helpful, except to keep him under a roof if it is the only option aside from homelessness.

I personally do not function well living with others (although of course how much difficulty I have depends on who I'm living with)....it is generally a disaster because of my communication and sensory issues, and my need to have control over my space (to maintain routines, spatial placement of objects to help as reminders and help with sequencing, which is essential for practical daily living skills things.....and for a sense of calm and safety, which is essential for my sanity).

Maybe talk to him about what the problems are for him when it comes to living with others, there may be solutions to those problems if living on his own is not an option.

What improvements could be possible? The only improvement I have seen after these several years is that he recognizes that he “hit a wall” at some point and withdrew, but has not been able to recognize the cause before he hits that wall. A big part of the problem might be that he was diagnosed after childhood, because there was no reason to think he would have trouble until he left the support of home. But I can’t help but believe other people/families have had similar problems, I just haven’t met any.

Often it's not that the problems were never there, it's that expectations change -- the demands placed on the person change when they go off to university or whatever, and then the previously hidden problems become obvious (not like deliberately hidden but you can't know if you are capable of doing something until you try it, if he never previously had to try it then it would be hidden).

The "cause" may just be that's the way it is for him -- as in that's just
how his brain works; He might be slower to learn how to do certain things and/or may have to do them differently than most people, or it may turn out that he can never do certain things that non-autistic people can do -- at least not without support.

It's impossible to say what improvements are possible (especially knowing basically nothing about your son) because each person with autism is different.

 

[GadAbout]

"Hitting a wall" is a very familiar experience for adults with autism. We call it "autistic burnout" or "autistic shutdown" but it means you just can't function because you are trying to do too much with the brain that you have.

Spokane is a big enough city to have some sort of autism network. Search for something like that on the Internet. You and his dad could benefit from services and supports for parents; your son might benefit by participating in a group for adults with autism.

If your son doesn't know very much about the challenges of autism, he has a lot to learn. For example, executive functions (planning, managing, etc.) can often be deficient, but tricks and tips can be learned to deal with it, from using a planner, to setting up alerts on a watch, to hiring an assistant or tutor for overseeing that important deadlines are met.

It's also likely that he is lonely because he may never have learned about the social challenges. This causes depression and is not easy to overcome. Going to a social skills therapy group can be very helpful, or possibly a support group for adults with autism.

 

[Poohbear]

Well that’s where we are at also. And yes.....he is working on an electrical engineering degree........and still harbors a long term goal of getting into neural prosthetics.....OMG. His only job he has ever held was handed to him by a friend of the family, a mentor, while he was still at the first college he was dismissed from. The thing is that he’s very intelligent I have no doubt he could do the work...... he is very aware that he has a disconnect problem and wants to know how to cope with it. Caring for his own primary needs and coping with his loneliness seem to use up all his energy, even in the dorms. I can look into whether halfway homes are available.

 

[Poohbear]

Thanks for this.
Yes, been looking throughout Spokane area and it’s not as “progressive” as you’d think for a big city. When he was first diagnosed, we tried to find support groups and were actually pushed away by other parents who had low functioning autism children. In fact, my son’s psychiatrist actually told him his problem was not depression.....that it was motivation/discipline.....that he did not have the discipline or motivation to focus himself on his task, and that was his CHOICE. I have asked people for references for anywhere in the area and have found some pretty strange ones (the biofeedback helmet was one) but most only provide service children under 21.

 

[Poohbear]

I would like to find our more about autistic burnout......what’s a good resource?

 

[Poohbear]

If he does not do well living with others than group living would not be helpful, except to keep him under a roof if it is the only option aside from homelessness.

.

Well that makes sense. And his room in the dorm right now is a single and he prefers that. He would try if I sold it.

 

[Poohbear]

If your son doesn't know very much about the challenges of autism, he has a lot to learn. For example, executive functions (planning, managing, etc.) can often be deficient, but tricks and tips can be learned to deal with it, from using a planner, to setting up alerts on a watch, to hiring an assistant or tutor for overseeing that important deadlines are met. “

We have tried to locate someone at his school for this and nothing is offered even within bus distance from the school.

 

[Autistamatic]

The main thing he and you need to take on board ( you may have already ) is that "High Functioning" really doesn't mean much, which is why it's no longer a valid diagnosis. It just means he has an at least average IQ but has no bearing on how capable he is of living an independent life. One can be a genius and still unable to remember to wash, tie one's shoes or put out the trash.

How long has he been on ADD meds? Do they help him in any way? Has his executive function deteriorated since he has been on them?

Rather than looking for therapies and interventions, by far the best action an adult autistic can take to improve their life is to engage with other people like them. Overcoming the limitations and capitalising on the advantages of being autistic requires comprehensive understanding of what it is and how it shapes the lives of others in the same boat.

No two autistic people are the same, but sharing our experiences not only provides cathartic benefits, but helps us to reshape our lives. He is clearly a clever chap, but needs to learn how to look after himself. If he's not social - so what? Socialising isn't for everyone, and many autistic people are happier not having social circles.

Encouraging him to join this or another autistic community himself and ask the questions HE needs to to get his life in order could be the most constructive advice you could give.

 

[GadAbout]

Thanks for this.
Yes, been looking throughout Spokane area and it’s not as “progressive” as you’d think for a big city. When he was first diagnosed, we tried to find support groups and were actually pushed away by other parents who had low functioning autism children. In fact, my son’s psychiatrist actually told him his problem was not depression.....that it was motivation/discipline.....that he did not have the discipline or motivation to focus himself on his task, and that was his CHOICE. I have asked people for references for anywhere in the area and found some pretty strange ones (the biofeedback helmet was one) but most only provide service children under 21.

I googled spokane autism adult support and found quite a few resources. Your son should be going to some of these things. There are classes available, for both parents and adult children.

Your comment that you couldn't handle the fight involved with keeping your son neat if he lived there while you are selling the house was perhaps telling. It's the rare parent that can deal with that! Is your son worried about his future? Maybe pulling him out of school to focus on "growing up" (self-care and self-direction) would be helpful in motivating him to get involved with some of the resources. Sometimes the very bright students don't bother to learn study skills in high school because they get A's without really trying, and then suffer for it in college where they need those skills. Also, sometimes struggling with an unskilled job like food service motivates a student to try harder in college.

If your son is more emotionally immature about these things than average, that isn't really surprising. Autistic adults can catch up, but it's not uncommon for milestones like college graduation, marriage, home ownership to lag by years.

 

[china autie]

College Experience Programs? Are designed with autistic young adults,and others in mind. There is usually a shared house or dorm, and staff to help with executive dysfunction stuff.

 

[H-Kath]

I cannot go thru the fight to get him to keep his living space clean enough for prospective buyers to look at.

Have you been able to get him to tell you what's going through his head when this happens? Is he feeling like he doesn't know where to start and it's too much? Is he freaking out over the disruption to his routine?

My partner needs to be told one step at a time to get through some of these things. She struggles with organizing or clearing clutter, so I'll do that then have her wipe things down, sweep, mop and vacuum. She also generally does better when she knows about disruptions in advance. For example, a few days ago we moved into our office to accommodate a roommate that had been sleeping in the living room. I gave her warning a few days in a row, which was upsetting for her, but when the day came she was able to help instead of melting down.

 

[Poohbear]

I gave her warning a few days in a row, which was upsetting for her, but when the day came she was able to help instead of melting down.

I won’t get a few days warning....more like 24 hours or less.....when someone wants to be shown the house. He does have trouble with changes to house routines.

 

[Poohbear]

College Experience Programs? Are designed with autistic young adults,and others in mind. There is usually a shared house or dorm, and staff to help with executive dysfunction stuff.

I will ask the disabilities office at his college about that.....they have never mentioned anything available in the community. The best we could do was to get him an accommodation to have a single room in the dorm and to be able to stay there even with a reduced class load.

 

[SusanLR]

The main thing he and you need to take on board ( you may have already ) is that "High Functioning" really doesn't mean much, which is why it's no longer a valid diagnosis. It just means he has an at least average IQ but has no bearing on how capable he is of living an independent life

This is exactly what I faced all through my life not knowing until I was 58 about ASD.
High functioning only refers to learning ability, not growing up to live on your own abilities.
I was one of those that had the genius IQ, but could never live alone.
I didn't have friends and the only family was my parents all my life until they passed few years ago.
They let me live with them and that was what I wanted. I knew if the day came I would be on my own
without them I would have no idea what would happen.

For me living alone meant too much stress, depression, and anxiety. I couldn't cope with everyday
life unless someone was living with me. Somehow that took most of the stress away and I could function
and had a good career as long as I could live at home with what I was used to and who I was used to.
Otherwise I just fell apart. Hitting a wall is a good description.
I had no help or diagnosis to know if help would have helped my situation.
It may be true for him too, that living with you will be the only way he can make a life.
As far as selling the house, if he can live alone in a dorm, perhaps you can find someway for him to
live that way until you get the house situation finished and move into another place.
Meanwhile look for resources or speak with a psychologist about resources.
I'm glad there are resources in today's time for us at a younger age instead of it not even
being acknowledged like it was when I was young.