Need to help 19 yr old son learn about his autism

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Hello all,

I just signed up this morning with this site and thought it may help if I post a question....

First, a little about us:

I have 5 children, oldest is my son who is 19 and then 4 daughters, 17, 14, 10, and 8. My oldest was unfortunately diagnosed with AS late in his life, at 17. Before that, life was pretty difficult both with him and for him. He was placed in self contained classrooms at 7 and was labeled a bad kid. He was also sexually abused at the babysitter's house by her 19 yr old son when he was 6 so I am sure this was a catalyst for a myriad of problems. He was placed in state's custody at 17 because of his anger and some violent episodes when I was a single mom and it was just us girls with him at 6 foot 4 and 230 pounds. He is now on his own at a group home type situation, which is very difficult for him because it is with other young men that trigger him with their own behavior issues. He knows he has AS and has received some counseling from an AS knowledgeable counselor but only for 6 months before he was released from state's custody. He is stuck at this point with not acknowledging the role that his AS plays into his life, so it is an invisible stumbling block that everyone can see but him. We have him come and spend the night and try and help him as much as we can, but it is difficult at best. We all start to annoy him and he gets very frustrated and not nice.

He is incredibly smart (big shocker ) and is about to enroll in college, and I know if he doesn't get his mind around his AS he will just blow off his classes and find a really good reason (teacher is driving him crazy, etc)

My husband and I want to help him and also help him be successful, but when we bring up the AS subject he gets irritated and says we are always blaming things on that. Then I think, but can't say to him, 'It's either attributed to AS or you are just an insensitive jerk'. I don't want to drone on and on about this but I am thinking an intervention of sorts may be in order and some AS counseling. -On a funny note, one of the main reasons he hates talking about his AS is because it sounds like 'ass-burgers'.

Any help from you other parents would be greatly appreciated,
Thank you

Make up a new name for AS. I view AS in terms of brain type not the name of the guy who pointed it out to the world. A few example Low social brain. High logic brain. Order seeking brain. And 17 years old was not too late. Use reason not the I said so that works even less well on someone with a High logic brain. Help him learn think of his social skills as being 5 to 7 years less than his age of 19.

You can always call it an Autism Spectrum Disorder or just autism. The terms are fairly catch-all.

You could simply not bring AS into it at all. If it is obvious to him that he has social problems as well, just set about learning how to cope with them without mentioning their origin. The main reason the label is useful is because there are many people who have it and you can learn from their coping strategies. You can simply take the various coping strategies and apply them to your son without him knowing about it.

I think acceptance is important, though. Has he read on the subject? Most people with Asperger's just kind of roll into it because they see how much they fit the profile. If he has a logical mind, just show him lists of characteristics of people with AS or make him do AS-tests and he'll have to see how much it fits him.

Also, try not to overdo it. When others push me, I often feel the irrational need to push back. I often just need some quiet time to think about it before I can come to any conclusions.

Can I point out somehting to you. Your son is 19 . From the tone of your post I assume you have come here with the mindset created by clinicians , ie you son has some ilness or impairment. In reality he is an HFA ,and in some respects he's going to be smarter than you.

Firstly understand this: you have no right whatsoever to publish his personal details in a public forum. Privacy is a basic human right, his right. As a social consideration what are you going to do for his self esteem when he finds you have published his details? Would you walk into a room full of young people and say" hi this is my son ....."ditto above , I think not! You sure he's the one with the communication problem?

Secondly if you want to encourage your son to come here, fine and good, thats what WP is here for, but I think you have to see that you have been immersed in a set of attitudes which polarizes notions of NT=right AS=wrong, many of us contend there is less wrong with us than there is with NT's .

Think about it.



OK.

So how would you feel if you mum had come here and splashed all your personal details all over the place and then a few months later you came here yourself and saw them?

I don't think they have the right- I have no problem if they want to do it in a personal section private to them . But I personally feel uncomfortable that the rights of this individual, who is an adult are being overlooked.

I would ask you to consider when the interests of this young adult are weighed against the needs of the parents, which need is greater?

First, WTF is he doing in a 'group home'? Putting an autistic person in a 'group' anything is only going to exacerbate their worst sensory overload issues. How can you expect him to want to understand his condition when YOU clearly don't understand it?

Second, don't expect college to work out unless he's driven by an obsessive special interest. You're battling lack of focus problems as well as Executive Function impairments and social adjustment issues that will put him at odds with authority figures of all kinds, because NT people DO NOT UNDERSTAND THOSE WITH AUTISM AND DON'T CARE TO LEARN.

Third, a great many people have managed to muddle through life without even knowing they had autism, so whether or not he cares to study it is up to him (and I guarantee the more you push it, the more he will resist). I was well past forty before I ever knew what AS was. Understanding the condition has done a lot to help me understand myself and why my life has gone the way it has, but it has done nothing to fix anything. My autism is still incurable and untreatable, the problems it presents me with are still problems, I'm just more acutely aware of them now.

The only thing autistic people need in this world is for the non autistic to accept them as they are, instead of trying to treat, medicate or 'cure' them out of existence.

VW- please understand I am not being cruel or hurtful to the parent of this young man. If she wish to interpret it as rudeness then there is little I can do about that. This is how I see the situation from my perspective.

This parent has have arrived here and presented the young man as a set of physical attributes situational conditions and clinical diganoses. That is because of her experience of being processed by a system that regards her son as being impaired , or sufferning an illness, she hasn't presented him in this way because she doesn't love ,or want to love him .

I am not sure how the mind reconciles the needs of an individual to be accepted and loved for what he or she is, with these kind of labels and attitudes. I think they might get in the way ?

I really don't see it at all coming across that way.

Anyway, back on topic, my advice is to set aside the label right now and just explore his experiences, compared to other people's. Ask him whether he thinks he's like most people or kind of different. Then pick a specific situation where others were reacing differently from how he would. I'll use me as an example.

I went to this one hotel for my friend's birthday. She is a neurologically typical person with cerebral palsy, and invited three guests - me (PDD NOS) and two other NTs with CP. Our plan was to go to the bar, but when we arrived, there was a band playing in the bar and they were charging admission, so we went to the hotel's restaurant instead. Now, my friend said that had I not been along, she and her other friends might have gone to the bar anyway and listened to the show, but it was far too loud for me. Even sitting in the lobby, I was getting a headache. So we went to the restaurant and had a good time there instead.

The important point is, to me the music was unbearably loud. Going inside the bar while that music was playing was unthinkable for me. But it was clear to me from how my friends were acting that they liked the music and wouldn't mind going into the bar while it was playing - because it didn't sound as loud to them as it did to me.

Similarly, other autistic traits can be explained by concrete examples. For awhile I went to a youth group with a mixture of people with developmental disabilities as well as some NTs. The program coordinator, a woman, seemed to be friends with this one man who was older than most of the participants. I never guessed it was anything more than mere friendship. It came as a big surprise to me when they announced that they were getting married. But no one else was surprised - they'd spotted within two minutes of seeing the two together that they were romantically involved.

For a long time I didn't realize everyone else was reacting differently to things than I was. As a result, everyone else saw me as much weirder than I saw myself as. It's only once I realized I was autistic that I started noticing these things.

Wow - much of these responses were somewhat negative. While AS can make for difficulties in life - it's not all doom and gloom.

It sounds as if you had to make some hard choices and that your son has had some incredibly difficult challenges to overcome. I hope your son is self driven to attend college. If that is the case then definitely get him all the support you possibly can. Most colleges have an office that assists students with disabilites. Many of these include counceling and peer groups. A peer group may work well to introduce him to AS and what it is and isn't.

In the meantime, it may be beneficial for you to do all of the reading you possibly can. Learn as much as you can - understanding him and AS will go much further than any sort of training course or 'professional' help. Love and support at home are key.

VW- Maybe you forget, I am a parent . I have two adult children. I would never post their details in this way without their consent . If this parent wants support they should ask for that support for themselves. Their problem is not they have an HFA young adult (he's not a child) but rather the dynamics that happen in a family with an HFA for which they share some of the responsibility for the outcomes.

I know that sounds harsh and I know they are zooming around finding time to care for this young man, keeping bonds with him in the group home and that will be exhausting , particularly as they have other children.

If they arrived here and said 'we are worn out, at out wits end we don't know how to find the energy, we have to work as well'- that would be their experience of the situation from their perspective., However they have described their whole family situation in terms of this young man's characteristics and loaded it back onto him.

My blood pressure isn't raised by this , I am being quiet objective here, they sound like they love him deeply and simply don't know what to do or how to accept the situation themselves.

By seeing this young man as a cluster of clinical diagnoses and labels and half-theories and reducing this down to one concept, 'autism', and trying to focus it back onto him,
probably at a time he is resisting , trying to make sense of his own identity, there is the possibilty he will resit their efforts as well. This is going to take more energy and create more negatives and the young man may feel very much on his own , in a very weird and sometimes frightening place in his mind .

Se here's the issue- he can't change the parameters which define what he is , no one can, he can choose to modify those parameters to his advantage , but everyone in the family has to accept those parameters including his parents, siblings and relatives and family friends.

Now, setting all the radical arguments of whose 'problem', ( if indeed it is a problem,) is autism aside - what will survive of this family and everything they are about to collectively go through, is love.- He's likely to argue this isn't his problem, and in a way I agree , it isn't and they have to be prepared for this.- Have you ever argued with an HFA going through this stage of finding their identity and developing a senseof worth and self?

This parent asked what was on her horizon- well I guess a response like this is: . I was that young man's age, once myself- how am I expected to see there is anything fundementally wrong with him?

Tough isn't it.

Meme.

To be perfectly honest, sometimes people with AS have to learn things the hard way by going out into the world on their own, and that might be the case with your son.

A lot of times, when someone with AS is left on their own they actually do rather well because they don't have the pressure of others telling them how to live.

Other times, they struggle for a while.

He might have to end up in jail to learn that violence is not the answer. He might have to face multiple life failures and become completely frustrated with himself to learn that if he wants certain things in life, he has to meet society half way.

Encourage him to make good choices but allow him to be an adult and make his own choices.

He might not think that when he reads it here.

He might also not think that if a journalist wanting a AS my-pstory picks up scattered details in posts and tracks him down. I could.

I do not think they have the right. He's not a child.