Is it too late to help him?

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My son is 31 and it's only in the last couple of years that I've learned enough about Aspergers to recognise it clearly in him. While that's made it easier to understand him it's also brought up a lot of guilt about my lack of patience with his behaviour during his childhood/adolescence and how much I wanted my little square peg to fit into that round 'normal' hole. Aspergers was never mentioned as a possibility - I was even told by some very smug social workers that his behaviour was 'reactive - totally consistent with sexual abuse' (the hobby horse of the '80s but one that I spent many years believing because they were the 'experts').

But those wasted years when we could have been helping him find acceptance and his way in the world are history - it's now and the future I'm concerned with. He's a man with lots of positives but the social awkwardness and poor communication skills still overshadow much of his life. We discussed Aspergers a while ago and he said he'd thought of that too but changed the subject and I'm hesitant about bringing it up again. He wore so many labels when he was younger and I don't know whether going on about it will just make him feel worse and whether I should just wait for him to bring it up himself, if he wants to. I want to put him on to this site but while we've got a close and easy relationship most of the time, sometimes he goes off into this place where it's hard to read his mood and even casual conversation has a 'tone' he can't deal with.

What I'm most curious about is this (and I get that everyone's different etc): Is being diagnosed with Aspergers as an adult generally a relief, or does it just make you feel depressed about the future?

You can NOT blame yourself for not knowing! It's so difficult as a parent to find the balance between letting them just be as they are and when they actually need help because "as they are" is putting them at risk or under too much stress.

As a mother who has battled with whether or not to go to the "professionals" i know how hard it is and the inner struggle of wanting to do whats best for and protect your child and not being sure exactly WHAT that is. It's important to remind ourselves that WE are the professionals on our children. Period. Motherly instinct is *usually* a very powerful thing.

Your son is older now so it really is his call, if he doesn't want to deal with any more professionals and labels, then, leave it alone. I'm 25 and I'm self diagnosed, i used my own research and discussed it a lot with my mum and i've no doubt i have AS. It was a huge relief, had me in tears sometimes to FINALLY understand why i went through all i did growing up and why i am the way i am and why people react the way the do to me. It was entirely positive for me, but we all experience things different, so i think only your son can answer your questions for sure.

Dilemma, thank you. The logical me understands that I am not to blame for not knowing, and that I did the best I could with the information I had. Still, sometimes I'd like to wind back the clock when I see him struggling socially and genuinely at a loss not knowing how to 'be' in different situations.

You are right - it is his call and I suppose the fact that we can talk openly on most things means there will be an opportunity to bring it up in a non-confronting way at some stage. I guess I suffer from the impatience of having had a 'lightbulb moment' and wanting to share what I have learned.

Thank you again for your thoughts - they have helped, believe me.

Beejer, I discovered AS when I was 36 and it's been both extremely positive and sometimes depressing. Right now I'm struggling with the dichotomy between my life choices (made when I was unaware of my autism) and getting what I really need, which is a lot less exhilarating than the initial moment when I realized why I was the way I was, but I know this is a necessary phase to accepting my autism and building a life that truly supports me. Overall, finding out I'm autistic has been a lifesaver, and I mean that quite literally.

Speaking as an Aspie: why don't you just be frank with your son about your hesitation to intrude on his life coupled with your desire to see him as happy and fulfilled as he can be, and how you think Asperger's might play into that? And ask him if he wants to talk about it with you. I, for one, love that kind of honesty from people, and it's crucial in those close to me. It's the only way I feel safe, and taken seriously, and able to confide in someone.

Ta Saja - your experience and feelings give me a useful insight into the struggles I imagine he might face.

The thing that occurs to me about AS is how widespread it must be, if you don't define it too specifically. I recognise some of its attributes (to varying degrees) in other family members, including myself. I can relate to many of the 'outsider' feelings of being out-of-step socially and have also been through periods of compulsion that have been self-destructive (eg bulimia). Being able to channel this into creative outlets - writing and design, where intense focus has mostly been a plus - has given me an escape that's productive and energising but this took a lot of years to happen and I was older than my son is now when I realised there could be an upside to obsession. So I guess what I really want for him is to know that feeling of having a place, no matter how unconventional it might be.

I take heart from stories like yours that don't minimise the impact AS has on a life, but can still find a way to navigate it.

I didn't get dx'ed until I was about 40 and it was both a shock and a relief. The condition wasn't recognised until (I think) the late 80s, so there's nothing that could have been done prior to that.

First: This is NOT your fault. The diagnosis of Asperger's Syndrome probably didn't even exist yet when your son was a child (I'm too lazy to actually count the years right now), and if it was, it was still "new" without much information about the topic around. So don't blame yourself.

Second: It's your son's choice what he decides to make of it. You said you discussed AS with him, and that's all you can do. Your son is an adult so what he makes of it isn't up to you, even though you clearly want to help. You can't press him to get a diagnosis.
About a diagnosis as an adult being harmful or a relief, I don't know - I was diagnosed with 3 years. (First with "atypical autism", later re-evaluated to AS, though the criteria here in Germany are a bit different so it's hard to compare diagnoses. It's not important here anyway.) I've read very different stories on this site, but the general gist was that optimistic people liked to have a diagnosis that confirms what they are, and people with a generally more negative outlook on life tend to become even more depressed. So it probably depends on the personality. It's not as if people with AS were miraculously all very similar to each other in personality. They aren't. Without knowing your son, there's no way to tell.

Thanks Eller, I get what you're saying about it depending on the personality. What exactly is involved in diagnosing AS? You say the criteria is different in Germany but is the actual testing or whatever the same worldwide?

Getting diagnosed will be a relief for him. Get him in touch with a local asperger's group so he can meet others like him.

The best thing that could've ever happened to me was to learn about AS/Autism...after reading the Tony Attawood? book, or at least his website it just literally brought peace to my heart. I do believe you should at least buy him the book and give it to him...do not pressure him, but I do believe he will find peace...

By the way, do not feel guilty...I wish my parents were like you...I have tried to point out to my mother and father about AS, and how it runs in our family...it is so very obvious...my kiddo has it, I have it, I know my uncle has it, his son just had a son and he has it...etc...but my parents REFUSE to acknowledge it...that has hurt me more than had they finally acknowledged that this is indeed who I am...I am resentful not for what they did before, but for what they continue to do know even though they have the information and it is clear to just about everyone that I also have this...

I was diagnosed with Asperger's at age 20,back in 1999, but they did not have enough information back then. I was diagnosed with Atypical autism at the age of 3. For many years my mom told me it was regular autism, but just recently I read into my records and it was atypical autism. I did not have the usual symptoms of autism either. I talked at 8 months old, first sentence at 9 months. Then at 18 months, after my sister was born, I stopped talking(well according to my mom, I was talking so fast that I was not understandable, so they considered that "not talking"). But as soon as I went to speech, I caught up practically the first day.I also had the repetitive movements and sensory issues. that was it. I never regressed in anything else,but speech. I actually was on time and/or ahead with everything else, especially self-help skills, which i learned on my own.
They took away the diagnosis at age 6,but my mom kept telling me I had still had regular autism at age 16, even though the school system told me that I did not have it. I knew that I was not the typical autistic because there were high functioning and classic autistic kids in my school.I was not in classes with them because I was fully mainstreamed by 8 years old and was in high honors classes in both middle and high school.
I read the Uta Frith's book "autism and Asperger's" back in 1994, and I did not identify with the autism diagnosis, especially at 16 years old. But I identified more with the Asperger's diagnosis, though Asperger's was just recognized in the United States in 1994 and they were only diagnosis kids at that time, especially in my area.
I was re-diagnosed in 1999 with Asperger's, when i went to counseling for having issues with not being emotionally ready for the adult world, even though I was mentally,cognitively, and independent enough to be on my own. I just needed self-direction and some counseling. But my mom being my mom and getting the counseling at an Autism center,the autism center had a group home/day program and I got put in there instead,even though I never needed those kinds of services. They were just desperate to get me something that I got stuck in this place. I hate it. They treat me like I have no brain and I am the only person here with Asperger's. Everyone else has autism with mental retardation and psychiatric disorders on top of their autism. I did not fit well with any of the clients,especially the higher functioning ones. I am the highest functioning one because I am the only one who does not have any learning disabilities, nor mental retardation. The higher functioning ones have mild mental retardation and/or borderline intelligence. Unfortunately, the higher functioning ones,are not as independent as I am, and need assistance with everything all of their lives. Now I am leaving.
Even though the area I live in does not consider Asperger's a disability that needs services for any group home/day agency for developmental disabilities, the agency had to "lie" to the state and say my diagnosis is classic autism with mental retardation, even though in the agencies records it is just Asperger's with no learning disabilities, what so ever.
The other day, I was told that they will have a separate program just for people with Asperger's. Unlike the traditional day program where everyone sits in a unit all day and do workshop work, this program will actually have job training skills, career assessments, and everything a person needs to get a full time job. The program only lasts one year and at the end of that year, the person would have a full time job. Unlike the traditional program where it is a mediocre job, these jobs can be regular full time jobs that are actual careers. These are great paying jobs with benefits, like medical receptionist or any other job a normal person might have that would have great wages, not just minimum or less than minimum wage.
The age range for the program is 18-25 years old, but because I am 30(will be 31 in November), I am not eligible, so the only way I had to do things is to go back to college, which I will be doing in September. Because Asperger's is not eligible for the state's developmental disabilities funding, the program is funded by federal grants that are sponsored by a could of our state's politicians that are members in the United States congress and Senate.I wish they had this many years ago, because as I was just told, I would have been in that program, rather than the traditional day agency program.
I wish you all of the luck with things. The first step is that I would get some counseling. Listen to what your son feels that is best for him and what his needs are(employment, life, anything).
I hope all is well.

Thanks Psygirl6 for the insights. You sound very independent and that's also something about my son that I recognised early and that helped me feel better about him leaving home at a young age (17, while he was still at school). Despite the problems he had socially and with communication in general, the upside was that he developed self-sufficiency early and seemed to thrive on responsibility. Because he didn't have any close friends he didn't seem as susceptible to peer pressure and could generally make smart decisions about right and wrong without trying to keep up with others. Managing his own money and time was something he did better without my help when he was that age and when he was 18 I ws fully confident leaving him in charge of his 16 year old brother when I went overseas for a month. People thought I was mad to do that but he kept house, worked at his job, made sure his brother had clothes and lunches for school and that he got there on time, and I came home to a neat well-run household.

Unfortunately he doesn't seem to have retained those skills and that attitude. He's either lost confidence in his abilities or is unable or unwilling to manage his affairs now. He got himself into a lot of debt and though he's cleared that now, he still can't seem to handle money and is always borrowing it from his brother or getting behind on ordinary expenses. I've bailed him out a few times but have said no to other loans he's asked for, and either way I'm never sure if I'm doing the right thing or not. In some ways he's still so independent and determined to take care of himself but in others he is really apathetic about money and doesn't seem to care if he has it or not. I could respect his choice to be in control of his own finances if he could accept that the consequence of blowing money on a whim is that you then don't have it for other stuff you might need later. I'm proud that he got himself out of debt because he did owe quite a bit of money (even to loan sharks) but worry that he has no desire to ensure his financial security by putting a little away for emergencies.

I've backed off trying to talk to him about this as he has to make his own path the way he chooses, but I do wonder how come he lost the desire/ability to manage things the way he used to. It's like he's decided that since he doesn't 'fit the mold' socially, nothing else matters either. Maybe he always felt this way and was just responding to the admiration of myself and others (people would praise him for his responsibility and maturity when he was a younger adult, sometimes to the point of embarrassing him). He's managed to earn all sorts of transport licenses and done lots of short courses that qualify him for a range of jobs - directions that he initiated himself - but I think maybe the social impediments that make it hard for him to sustain relationships with colleagues and bosses turn him off trying for any jobs that would take advantage of those skills. He just shrugs them off as something he did but I know he worked hard to achieve them, so I can't help thinking he believes there's no point in pursuing them.

I think you likely did, but since you did not say, I'm wondering if you have apologized to him yet and told him of your regrets.
He sounds depressed to me, like he feels he worked so hard and it got him nowhere and so why try. I notice that a lot of the men on WrongPlanet are totally depressed because they can't get a girlfriend. That's something I doubt you can really talk to him about.

I'm glad you are working so hard to educate yourself. Bless you.