my autistic cousin's mom is in denial

[aquaria127]

maybe I perceive myself having family problems. Is it that I can't mind my own business? I'm upset at my aunt who I think isn't doing all she can to help her teen-age son who is autistic. I don't have any kids and I don't know how to raise them.

But.

 

please tell me if I should keep my nose out of this.

 

Well without going into too much detail, autism is a developmental disability that affects senses, communication, social interaction. Its not curable, but I have met kids who started out like my cousin who can perform some tasks, with ongoing therapy and lessons. I just want to help my cousin. He's regressed so much that he doesn't know how to do sign language, write notes, use a fork to eat or pour himself a cup of water anymore.

I don't want my grandparents, who are in their 70s, continue to babysit him because his mom and dad don't make the time to get someone. And after he leaves high school, I don't want to see him get put in an institution. My grandparents told me they can't do anything because they were told "it's not their child."

 

about 6 months ago a woman I was interviewing for an article about special education said she wanted my aunt and uncle to join her parents' support group. They still haven't followed up on it. maybe even after 16 years they are in denial and/or ashamed of having a "special needs" kid?

 

I was going to attend an autism seminar/Q&A today, but my aunt backed out. She told me she was off work, but that I should go and "keep her posted." I decided not to go, because she's the mom, she needs to make the effort. She once told me she doesn't want the hassle of confronting the school about getting adequate teachers, programs, etc. I think in a way I might be irritating her by asking her to go to these workshops and meetings with me. I know I can't do anything to change her parenting ideas. I wish I could though.

[Tony T]

There are a lot of things that can be happening with your aunt. I don't think she's in denial. She's probably guilty of wishful thinking...that one day the problem will just blow away and her son will be just fine. It's a tragedy. Your cousin has already passed the years that would have been very crucial in the successful intervention of autism. However, it's not too late to get the right therapy that would make his life easier. Frankly, I think it's tantamount to child abuse to not seek the very best for this child. If I were you, I would seek the advice of educators and social workers in your area to see just what the best avenues of help would be. I think your aunt would cooperate if it didn't take too much effort on her part.

 

Parents of mentally challenged children often feel deep and paralyzing guilt over this therefore cope with those feelings in all kinds of ways, including denial. The want to pretend the problem doesn't exist.

 

It's a real tragedy that there is not more quality care and treatment offered by public agencies for the mentally challenged. Even though it's getting somewhat better, the feeling is still wide that these people are not productive members of society and should be caged in an institution for the remainder of their lives. In the defense of your aunt, I have a friend who has a son with ADHD and a host of other serious mental disorders. He is now 21 years old and it is totally draining and a full time job just to keep him from destroying the world. He is capable of every bad behavior known the man and embarasses his parents on a minute by minute basis. It's a hell I would never want anybody to go through.

 

Please try to help your cousin get help in whatever way you can...without making it a life project. It's not really your job but it would be an act of mercy to make it a project for a day or two.

[midori]

I really commend you for taking such an interest in your cousin's well-being. But as you may know, autism occurs on a spectrum of severity, and can co-occur with other developmental disabilities like retardation, or degenerative conditions.

 

So you shouldn't automatically assume that, because your cousin isn't able to perform at the level you have observed in other autistic children, your aunt must not be getting the right kind of assistance for him.

 

Dealing on a daily, hourly basis with someone with severe handicaps can be overwhelming and isolating. I'm sure that your aunt would appreciate an offer of assitance from you. But I would advise that you make that offer based on what SHE thinks is needed and appropriate. Especially at first. You certainly would want to make sure that you have all the facts about the specifics of your cousin's condition before you make recommendations to your aunt. There may be more to the story than you are aware of. And if it is indeed the case that there are resources available that she is just not taking advantage of, I suspect she would be more receptive if she felt you were suggesting things with a good understanding of her situation.

 

You just don't want to come across to her as basically saying, "You're not doing enough for your handicapped child, whom you've cared for for 16 years, and even though I don't have kids I know better than you." Not that you are saying that, but you want to be careful that you don't sound like that to her.

 

Good luck. I think your concern and wish to help are very admirable.