Launching an adult son with high functioning autism

We have an almost 30-year-old son with high functioning autism, Crohn's Disease, gout, and asthma. We moved out of the house in the big city to retire to a smaller town that we have always wanted to live in, and our son is staying in the city house. Our son was working full time for a while and doing well, but then started having gut pain which after testing the doctors have decided was caused by a serotonin deficiency for which he was prescribed medication and he is now off of it. He is now having difficulties paying bills and is not telling us everything about his financial situation. We believe he is hiding from us the degree to which he is staying at home when we are not around. He is also spending money on video games, and online entertainment. He claims to be in in pain but is just fine on weekends when we are around.

When we try to talk to him about it, he gets upset and melts down. We are in the process of making life uncomfortable for him so that he has to grow up and assume responsibility. We've given him a one year deadline to pay off his credit card, have restricted his access to our financial supports, and are contemplating other measures. The biggest problem is that his medications for Crohn's Disease are expensive and it takes several months for him to hit the limit on his out of pocket maximums for the year, and reimbursements from the pharmaceutical company's financial aid program do not cover all of the expense.

We're almost at the point of cutting ties completely and booting him out of the house, but that is a drastic move. We're both devastated by how it seems that he can get going just fine for six months to a year, then fall apart for that long if not longer. He has been going to college off and on and has a year's worth of work left to go. The same phenomenon happens at college as we are seeing at work.

Given that we are going into an era where it is likely that there will be fewer government supports for people like him, what on earth are we going to do? Boot him out into the world and just hope that one way or another he figures it out? We've tried a lot but he's been resistant. A friend has recommended Mark Hutten's program, but I get nervous when I do an internet search and "scam" is one of the first things that comes up--plus the things I hear from Hutten that are available for free mirror what we are already doing.

ARRGH. Do we push him into applying for disability, or is he just malingering? How much of this is real and how much of this is just wanting to be taken care of?

  • God I feel for you particularly living in the richest country in the world but with the worst health 'Care' in the developed countries, or most of them. I live in the U.K. where our wonderful NHS is under attack to be privatised. 'They' want the same healthcare system here as you have in the USA. Insanity. Just to make a few greedy folk even richer.

    The way to help your son is to never stop loving him; never abandon him. Little by little, wean him off his dependency n you both, but remember you wrapped his comfort blankets around him; layer by layer. Don't remove them all at once but 'layer by layer'. You moving out and leaving him alone was huge for him. But the way you are approaching this seems sensible, bit by loving, bit. Be strong. Good luck. ❤
  • You sound like you are trying so hard to make sure your son can be ok on his own! It is so hard.

    It sounds like to me he needs to be identified as disabled by agencies (if he is not at this time) and then get the necessary financial/community living supports in place so he can stabilize and live as independently as possible. I think it was a huge huge change for him when you moved and he lost those supports of you being there. My 24 year old son would not be able to figure any of that out on his own ever. If we threw him own on his own he would fall apart on day one. Even though my son is stable with the supports in place he has at home and works a part time job, he would not be able to be self supporting...we are planning for that trying to get necessary funding in place and save for a trust. We are working on getting him supportive housing.

    Sounds like your son is unable to do financial planning/managing, and cannot manage a credit card at all. He may need supports his whole life to be able to survive in life. Can he qualify for a case management and an agency personal care worker? Is it possible to get some kind of power of attorney for him for the financial and have someone do that for him?

    If you can accept this, it is very common for things to fall apart on and off since managing anxiety and managing life in general with autism is difficult for the person with autism. My son will need a case manager and a personal care worker for about 10 to 15 hours a week to keep things on track. Your son most likely will need something like that also. Sometimes things fall apart for my son out of the blue also. Autism is so hard.

    At age 30 you are probably seeing what your son's level of functioning is for his life. With supports he may be able to progress in areas like financial management but maybe not. It doesn't sound like sounds like he needs supports in place for different areas of his life and that is ok. He may need those supports his whole life. The main thing is to figure out what he can and cannot do which I think you have a clear idea about now and then put support in place in the areas where he can't do things. He may need to be cared for his whole life. The agencies and personal care workers continue to work on goals for more independence but he may never be independent in a number of areas of his life.