Denial of AS

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I have two AS sons and both are in denial.

I realize that an official diagnosis may be the thing that is needed to convince them, but we don't have the money or the insurance to do it. Both sons are grown, but neither has ever lived alone. The oldest is 28 and has always lived with friends, always in a group. He lives with 3 roommates now. The youngest is 24 and living at home. I fear he won't ever be able to live independently.

The youngest has always been our Martian Child. He was pretty low functioning as a child, did a great deal of hand biting and was always in his own world. He hated to be touched, etc. We didn't know what autism was and we homeschooled all 4 kids (2 daughters in there also). My husband and I always confided to one another that he was either ret*d in some way or an absolute genius, because he went from one extreme to the other. Because we homeschooled and he was treated like everyone else for the most part, he didn't suffer the childhood of being picked on and bullied.

Anyway, by Jr. High they attended public school and it was obvious to the school system immediately that he needed testing and special help. They didn't have many resources for him, he failed along through more than half the year before they even had him tested to see where to place him! Then they said he was ADD, but he wasn't. The symptoms never did fit.

After messing around with more testing and him failing everything, one person mentioned to me that it could be autism. I hadn't even considered it. I next saw a special on CNN about autism and my jaw dropped. When I saw the kids hand biting and some of the behaviors - they were identical to my son so there was no question.

That led to books on the subject and I quickly realized that my own life finally made sense because I have AS. This was such a relief for me! I can't explain how important this revelation was. I devoured more books, read passages to my husband who laughed and asked me if my picture was in that book! I also saw my oldest son clearly with AS. The youngest is on the spectrum more autistic than AS, I believe.

Here's the thing - when I shared this with my sons, thinking they would be equally relieved, they both were angry. Neither would even listen for quite a long time. I have slowly explained AS to them over the last couple of years but neither embrace it in any way. They say nothing is wrong with them, period.

My oldest has gone from one bad relationship to another, just crashing and burning each time, they both drink more than they should, neither is happy. I feel like their self medicating to hide from the world and hide from the truth and if they could admit these things about themselves they would be freer and could use their energy to build workarounds instead of hitting the world head on over and over. The oldest gets drunk and just rages at times - gets in fights even. At times he thinks he's losing his mind, and lately told me he is considering a therapist. I thought that might be positive so I sent him a list of therapists in his area who diagnose AS.

He said he doesn't want to go to them because if you walk in saying you have AS, they will find it. Or if all they know is AS they will not look for anything else.

I do not understand the absolute denial since this was such great news for me. The oldest told me I'm just looking for a label and everyone likes labels but the symptoms of AS are way too broad and anyone would fit into them if you tried. We went down the list of 5 or 6 of them the other day and he said "I'm not like that" "I don't have that" and I was stunned. What I learned is that he has no idea how he comes across. The things he says he's not are exactly what he is!!

This made me realize that the first thing you have to be is aware of yourself and in touch with the truth of how you really act and feel. If you're living in a different reality and kidding yourself, the symptoms don't match at all. But ask anyone around you if they match.

I'm so frustrated because I see them getting older and not making progress. They are stuck, they are always fighting to appear normal, they are always beating themselves up and feel like they fail all the time, but they won't admit or learn about or understand AS at all.

I also have done what everyone else does after learning they're AS - started looking at my family. I have always had big problems with my cold, detached, weird mother but I see now the AS in her. This has allowed me to be much more patient with her and we actually have a relationship now. I told her about AS and she firmly denies it and refuses to learn more. My sister is another one, she has many of the same symptoms of my youngest and has never functioned well in the world either. I brought this up to her and she flat out said no. Won't read anything, says she's not like that when she is extremely like that!!

I just can't understand the denial. Where does it come from? Is there any way to break through it? Has anyone succesfully turned an aspie in denial around?

One of my friends who typically denies he has AS, once told me that saying he had "AS" was taking all of his best traits and saying there was something wrong with him because of them.

And I can entirely understand why he believes that.

That is a good way to put it and I understand. I've always said if they had a pill to get rid of AS I would not take it. I would never willingly give away my good AS traits.

Even over the last couple of years happily reading about and understanding more about AS, I did still keep it to myself and didn't tell anyone that I knew. My husband pointed this out and I said I didn't want them to know because they'd look at we with pity or like I was mentally ill or diseased or something. He insisted I should help spread awareness but telling others because I would be a positive image for people to have and learn about AS. So I did, I started with a woman I had worked with and I thought was friends with. She said she didn't believe it and then stopped talking me altogether.

Just this past few weeks I have decided if I'm going to help anyone, or just help myself, I need to admit it so I have 'come out' to several others I know and told them about Asperger's. So far so good.

many people don't understand AS. many people are skeptical about whether or not higher functioning people could even have AS ( this is what were told by several people when it came time to test him~"he's too high")..........throw into the mix too, that you're in the giddy first stages of your own dx~ and that's quite a mix you have. i'd focus on yourself for the time being.

Why do they need to accept it exactly?

It's a label. They can wear it or not wear it - they still have the symptoms regardless.

Get a diagnosis if it will help with funding - otherwise... there's no need.

Instead of trying to label them, try to solve their problems in an aspie way. After all, if they have issues, they want solutions and empathy rather than labels.

Great advice!

My husband is Aspie but in denial (despite the psychologist telling him). We have 2 of our 3 sons diagnosed with Asperger's.

Instead of fighting with my husband over a label, I interpret him through an Aspie filter. We're both very happy (as regards to a couple of years ago when the marriage was in big trouble.)

Helen

If your sons admit they have aspergers, they can start to deal with the issues and see what makes them tick.

I have just read the book 'A different kind of Normal" by Jeanette Purkis. Her parents suggested that she had aspergers but she denied it and went on a path of self destruction. It was not until she finally faced the truth after 3 years in jail, time in mental institutions, dope etc etc that she began to find health and happiness.

Of course you can't force the boys to face the truth. But I would suggest that you read the book. It will give you hope for their future.

BTW one of her big issues was her rage and violence which she has since overcome.

QFT.

My HFA son sounds a bit like your youngest. He's taken IQ tests and they will say the end number results in a borderline ret*d score, but then the tester will tell me that regardless of the numerical score .... the tester views him as extremely bright and I shouldn't believe the number (which i don't).

Even if your youngest accepts a diagnosis, he might not be able to live independently. However, you can set house rules that he should be able to follow. I would never allow my son to drink alcohol while he's living with me. I run a tight ship and he has to pick up after himself and help me with chores. I would expect him to be productive in some way. I would not live with an adult child who was drinking too much and not contributing towards the household.

About your 28-yr-old, I'd let him go if I were you. He's out of the house and on his own. You might not like his lifestyle and he might be unhappy, but he's an adult and we each are responsible for our own mistakes. If he needs money from you to maintain this lifestyle, then I would find a way to cut that off.

How does an Asperger's label help anyone? Are there techniques and strategies that help Aspie people overcome their weaknesses that don't help people without Aspergers?

I had a really hard time excepting it at first too went into a major depression.

It can help. I have a social worker which I rarely use but its nice knowing shes there if I need her and she really helps when I do. I am in voc. rehab and they just paid for some job training (now just need to find a job) and I am in public housing which I don't know what I'd do without.

My eight-year old is afraid of he dark, aliens, putting his feet down in the car less someone grab his foot. He says to me "I'm more scared of things because I have Aspergers. I'll always be like this." He's said this a few times to me. I never said this to him. He is a big scardy cat--majorly.

Maybe it makes him feel as if he's not strange or nuts. Maybe this is how it helps to accept it at a young age.

The older, the more difficult it would be to accept this diagnosis from mom. My older sons would have to discover it themselves. Not from me. I could merely introduce the idea, throw it around, and wait until they took the bait.

equinn

Did he get exposed to horror films or something to trip this level of imagination?

My kids (7 and 4) have watched a lot of films with high content - eg: Aliens versus Predator, but we always watch the special features and see how they make things in CGI or using Models, Masks etc..

They know that there aren't any real monsters and that we have to make movies to liven things up.

One of the things that made me in denial of my AS was that I was afraid of being labelled, like my emotions and interests are simply that of 'Standard Issue Asperger Mark 1', like I'm being denied the right to my own personality. And if I got angry, my mum might sometimes say that "you're just having an apsergers flare-up", but even if she was right, saying that was still counter-productive as it isn't recognising my right and reason to feel angry as a person with feelings, so it just makes me even more angry. It reminds me of when Richard Hammond was talking to Jonathan Ross in an interview after the jet-car crash, saying how he got annoyed that his family would sometimes presume that him getting angry was because of some suspected brain damage, ignoring the real reason why he got angry.

While people with Apsergers can share common traits, it's very important to not treat those traits as a blueprint for your child, as that child is still unique, they didn't simply come out of the aspie factory. So it's good to let the child see the traits as his version of AS rather than the AS version of him.

I wouldn't normally encourage laughing at it, but I know a 40 yr-old aspie who knowingly calls it "Asparagus Syndrome"- as it's a good way to laugh about the name, like, who says we should be named after an Austrian paediatrician anyway?

I am very much the oppposite. I know I have some traits that definitely fit in with AS: unusual interests, both in kind and intensity, social awkwardness, good skills in certain areas and a high level of anxiety in certain situations. Some people have attributed my difficulties to shyness and anxiety, but I definitely show some signs of AS.

You seem like a very caring mom, and it's obvious that you are doing the best you can do, which is awesome. You went and educated yourself about AS, which is very good.

Two things I wanted to say:

1) I have AS and I can tell you that one of the common characteristics of AS people is that we cannot accept blame very readily. What comes specifically to mind is a section in a book by Juanita P. Lovitt that was called something like "Solutions for Adults with Asperger Syndrome". In it, she tells the story of a man who was cheating on his wife. Rather than accept that he was guilty of his actions, he took to blaming his wife for his infidelity.

AS people sometimes cannot accept the fact that we are not perfect. The feelings of guilt and blame and the ability to accept that we are not perfect is alien to us sometimes.

Now, no one is perfect, and I wouldn't want to be cured of AS, either. However, that is not really an excuse. Everyone has their weaknesses and sometimes needs to own up to them.

I think your kids sound like they are afraid of admitting they might have AS, mainly because that would mean that they are possibly getting something wrong.

2) There are some that will complain that AS does not exist, mainly because the diagnostic criteria sometimes does not sound to us like there is something really different or neccessarily wrong. I used to have a reaction much like your son's when I was first diagnosed. There didn't seem to be anything wrong that was pointed out in the criteria and I think my first reaction was anger.

However, while the behaviors in and of themselves are not detrimental, they are different and they are scary to anyone we might have contact with. People who try to talk to me, but have issues with understanding, only end up in frustration.

I think the main thing I had to come to terms with is that being AS does not mean I have a disease. It is only a difference that has it's beneficial parts as well as its frustrating points. I eventually learned that it does not make a person inferior. It means tons of people will label me as inferior, but that doesn't matter. I am the only one that has to live with me and what they think of me is arbitrary.

I just think your kids sound like they are afraid someone might try to step in to cure them of AS characteristics that don't need to be cured, as well as those characteristics that do.

However, having been to see professionals all my life, I can say that that is not the case with a good therapist. A good one lets you describe what your problems are to them, and only helps you come to your own solutions.

They may encounter therapists that aren't so good, and may be afraid of AS. But that's not exactly something that's happened to me a lot.