Nearly 18 year old HATES his diagnosis

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Hello,


My son, who is nearly 18, is currently on a delayed discharge from a Child and Adolescents' Mental Health Service unit. He cannot come home, due to child protection issues, and various caring organisations have said they cannot accommodate him because he is too 'high risk'.

My son has a diagnosis of Asperger syndrome. He was diagnosed when he was seven and until about two years ago, he had no problems accepting it. Now however, he hates his diagnosis and reacts aggressively whenever autism is mentioned. He refuses to associate with anyone who he knows is on the autism spectrum (although strangely, he has no problems with his father who has AS and he has no problems with his brother who has no diagnosis, but who is almost certainly on the autism spectrum).

My son really needs help with issues that are directly attributable to autism. For example, his lack of theory of mind has left him extremely vulnerable to exploitation and there have been numerous incidents on the unit where he has been misled to do things that have resulted in him getting into trouble. Similarly, his intense focus on his negative thoughts, led to his arrest (for expressing thoughts to kill [and having blades on him]) this summer and his inability to consider boundaries led to the child protection issues (he was a victim) between him and his sibling.

My problem is this. There is a group home quite close to where we live. It has outstanding reports for care and safety and individuals are encouraged to build up their life skills and work on exactly those tricky areas that my son finds so difficult. However, although it is not an autism specific accommodation, many of the young people there have autism. I am afraid my son will not agree to go to this provision and time is running out for him. He will be 18 soon and his behaviour on the unit has been very disruptive ( e.g. in an effort to gain friends, he bought alcohol in for other young people on the unit and this resulted in one girl being hospitalised). As I noted, he has been sexually assaulted and arrested, so living on his own would be far too risky, but how on earth can I get him to accept that he has AS and needs support?

I realise this is not very clearly written, but I hope the main points are clear

I had trouble accepting my diagnosis as a teen. It lasted for years. He's still very young. I believe, with time he will grow to accept his diagnosis. Even if he matures more slowly than his peers he will mature over the coming years. When this happens these disruptive behaviours will cease.

The media doesn't make it easy with it's demonetization of aspergers, nor do Television shows, nor the publics view. Maybe expose him to positive examples of autism, ie Albert Eisenstein, Jerry Seinfeld, any number of various geniuses. Maybe he has it in his mind, as I once did that he is incapable of achieving anything. Maybe he needs to be proven wrong.

I wouldn't expect him to accept his AS right now, no matter how much you and others try. Besides, he is quite familiar with his diagnosis, it seems. No, maybe it is time for his family and carers to take an AS vacation and simply not mention it. But, more to the point, help him find ways to mitigate his own daily impairments; he might need a few self-accomplishments to show him the possibility of more. This would empower him by giving him some control over his life and that would go a long way to calming him, at least in this small way. By showing him that he can become a factor in his own outcome, he might begin to accept those in his life who can support him. In other words, think of how you would react to living a life like his right now. Being told to discuss something you resent and act to avoid it (quite difficult) would seem like an insult added to the injury.

Good luck with your son. I hope one or more of my suggestions do some help.

I would have to agree. Rejecting the diagnosis is a normal, even healthy part of human development.

I know your family is in a really ruff spot. I hope you find a way to help him with the rage and the social issues he's experiencing without bringing up autism at all. I mean, you don't have to actually identify the autism to treat the symptoms. Anger management techniques apply to everyone. Social issues and not being naive are simply a part of growing up.

I really don't think that it's important to tell him that he "lacks theory of mind" in order to help him learn about deception. In fact, all that stuff probably confuses the heck out of him if he really doesn't understand that other people have different thoughts than he has. (That's what theory of mind means.)

Hello,

Thank you for the replies. I think you are right, there is no point in trying to 'make' him accept a diagnosis. It is more about making sure his needs are met and he has a chance to come out of all this in a much happier frame of mind. I am going to look around the group home that has been mentioned and explain the situation. They have invited parents to look around prior to conducting an assessment with my son, so I think they value our opinion.

I have mentioned the home and my son is very interested, but he keeps stressing that he wants a 'normal' place.

Home is where the heart is, and normal is what you make of it.

That home IS normal, compared to living in the hospital. 18 year olds move out of their parents' house. They move to all different kinds of places, but the point is to make your own way in the world for a while, figure out who you are going to be as an adult. This is his way of doing that.

These types of situations are why I think it's vital for adult autistics to be recognized. Autism doesn't go away once you turn 18; if anything it's around this time that life becomes much more difficult for people on the autism spectrum, since society expects us to "grow up" and quit depending on our parents.

Yeah. I can't stand it the way they have a lot of programs to help kids and teens but once you turn 18 you're expected to act exactly like a neurotypical.

Maybe point out that if he doesn't like it, he's not required to live there all his life? Maybe ask him to try and see if he likes it, and find out what he likes about living on his own, and what is challenging? You don't have to be autistic to struggle with living independently; lots of young people struggle with this transition.

I agree with you. But I've also been on both sides when it comes to young adults who are violent. My aunt has a son with other disabilities who is violent and very strong, and could kill her in an instant, and has threatened to do so. I've worked in a day program which had young adults in this situation, too.

It's just hard. Adult children who are violent are not entitled to remain in their parent's home and essentially hold their parents hostage. If they cannot be safe with their aging parents, they need to leave the home. If they don't have the skill level to live alone, they need a group home, preferably a theraputic group home which will help them develop those skills.

Sadly, the alternative after that is jail. It is disgusting how many people in jail have autism, learning disabilities or mental illness. It's the vast majority of the prison population.

These parents want that to not happen to their kid. I don't want that to happen to their kid, too! It's just really hard when your precious little child grows into an adult man with adult strength and still has the temper of a 5 year old. It's not really a willful desire for violence, often. They just don't have it in them to control it at that moment in their lives.

It's a rotten business, this. Crap outcomes abound.

That said, what I am getting at is finding some way around the atustic penchant for absolutes. It's something I've become aware of in myself; the habit of regarding every new thing as a life sentence. I think it's got to do with EF struggles. Making big changes is so challenging that I try to make absolutly certain that it will work out, and that, in my mind, involves managing every tiny little risk. I try to tell myself that sometimes I just need to try something to see if I like it, and if I don't, I can try something else.

This young man seems to be having some major problems, so I assume that making changes in living situation is a hurdle for him.

I gotcha. And I agree. Help him see it as a for now situation or a just-try-it as a way of helping him not feel like it's this HUGE massive deal. And it's also helpful that it's the truth. No one can predict how much he may grow and change over the years. He could have a metaphorical light come on at any time around how to hold back his more aggressive instincts.