Telling My Son He's an Aspie

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My son was diagnosed with language delay when he was 2, Autism spectrum when he was 5, assorted learning disabilities along the way, and got the diagnosis of Asperger's when he was 14. He was already in a private school for LDs and got along very well, and there seemed no point in telling him at the time. It would have been hard for me to explain and difficult for him to understand. It was always my intent to tell him at the right time.

He's now started college, and it seems to be past the right time. The comfort of his friends and high school achievements are past, and he needs to know, if only to give himself a break. I'm sure I will be criticized, but I'm not sure I made the wrong decision. So many Aspies never know. I wanted him to be free to use and explore things with his very unusual mind without limitations.

The reason why I'm asking this group is because I'd like to know how you found out you had Asperger's. Was it freeing or devastating? How angry would you have been to know that information had been held from you? Is there a better way to find out? What should I not do? My only interest is that my son take the news as well as possible.

I found out from a psychologist and I was diagnosed several times, I found at first it was a initial shock and I didn't want to accept it, however later on in life, it gave me and the people are an understanding and I began to build on the knowledge and understanding which really helped me so I think telling him is the right choice, you could even point him the direction of this forum which has been a great source of understanding for me.

I don't remember the time that I was told I had autism but I was definitely told and I feel proud to know. Its awesome to know so I can tell others and they can understand why I may do some of the things I do. One day when you are spending time with your son, apologize for not telling him earlier on he had aspergers in an implied way and then say you have aspergers to him and tell him its something to be proud of and nothing to be ashamed of. Then I am sure he would understand some of the things that he probably questioned himself about and why he was thinking and acting the way he was. He would feel much more comfortable of himself and self aware if he knew. He would still have the same freedom he does now

I was in 3rd grade when I was told that i'm autistic and I didn't care. I knew that I was different and I was happy with the way I was. And i'm still happy with the way I am now, although if I were to be rediagnosed now I would be diagnosed lower functioning than I was then. I personaly would tell him soon. Also point him towards wrongplanet and if you want to you can send me a PM with more questions. I know of alot of resources for adults on the spectrum. By the way what state do you live in?

Yes, thanks to all of you, this forum is fantastic. Had I known something like this existed, I probably wouldn't have waited so long. One of my biggest concerns is that he would feel isolated, although quite frankly, that's always been more my concern than his. If he blames me or is angry with me and the world at large, at least there's support here.

We're in Florida, by the way. I may PM for help at some point but I'm still not sure what to ask. If you're offering free advice, I'll take it.

I don't know how exactly my diagnosis was explained to me - I was diagnosed at a very young age and as such, I have basically always known (seeing as I barely remember the time before diagnosis, and only for a couple years - before that there's pretty much nothing). I was told about this stuff from the beginning, although I'm sure I didn't really understand it until I was older.

I think it was explained to me in bits and pieces as I grew up. I do remember being explained certain parts of it, or things like being taught how eye contact works, why it's done, taught how to do it right, working on making it less uncomfortable for me, etc.

I don't mean to offend at all, I know you were trying to do the right thing, but I would have told him from the beginning, and I say this because I was only affected positively by knowing my diagnosis. It let me know why I am the way I am, helped me adapt, etc. Things like sensory issues would have been worse had I not known about my diagnosis - I wouldn't know why I was like that, so I'd probably think I was just a wimp or something (since that's how I've been treated).

A possible positive aspect of not telling him though: he has the option of keeping it secret. I say this because many people diagnosed early are pretty open about their diagnosis, and it is nice to at least have the option of not having it out in the open - I say this because keeping it secret, he can blend in better and avoid stereotypes. I also like keeping it secret because then I never feel like someone is treating me a certain way because of my diagnosis, which has happened many times in my past. Now I tell almost nobody. Currently only my best friend and exes know, of the people I've met in the past 5-7 years.

Don't worry about him feeling isolated, though; there are places online like WP where he can come, and there might be groups he could meet with down there for people on the spectrum. I would certainly tell him, though. I would prepare something, explain why you didn't tell him until now, etc.

Mom told me when I was 12 and I hated it. I felt like a freak, abnormal and I wanted to be normal so bad so being told what was wrong with me told me I wasn't normal. Her telling me I learn differently or that my mind works different or that I see things differently didn't help. I just felt like a freak. But there were some things I didn't get like when she tell me what was AS and to me it sounded normal. It just made me try even harder to be normal to prove I didn't have it. Sometimes I wish mom never told me but sometimes I think it was for my own good or else I wouldn't be where I am now. I would have been clueless and worse off. I might have found out on my own if I happened to snoop through my medical records. that was how I found out I had an ASD and I found out AS was a form of autism. Mom never told me it was a form of it and she said I wasn't autistic and that AS is just a form of it so it will pop up when you look up AS online. AS and autism are two different things she says.

For what it's worth, I've described one of his learning disabilities to him in a way that describes Asperger's, having to do with processing information and social cues rather than intelligence. The boy has had physical, language, and occupational therapy since he was 3. In part, we kept it quiet because his school, back in the beginning when my son enrolled, did not accept autistic students, and we didn't know where they drew the line on the continuum.

Too bad schools don't weed out for bullies as well.

Telling someone they have AS is going to be hard no matter what, but since you've had him in all kinds of programs already, it's not like he doesn't know that something is wrong. I hope in his case it will be like many others where a light bulb goes off and suddenly things make sense and then you can start moving forward from there. I do hope you tell him sooner rather than later, because even if he has a negative reaction, the sooner he knows the sooner he can start piecing things together regarding it. Good luck.

Well, I don't have any good advice.

I can tell you a few things from experience.

As for how to tell him, just tell him. You know your child a hell of a lot better than I do, but a lot of the time with Aspies, right out is best.

The diagnosis didn't exist when I was a kid. "Autism" was the non-verbal child who sat in the corner shrieking and banging his-- always his-- head against the wall. I came across it myself around '97 and figured it out on my own. Most people said I had to be wrong, because I walk and talk and feed myself and go hide somewhere when I bang my head against the wall and all that good s**t. Besides which fact, I'm a chick.

The KNOWLEDGE was, and continues to be, a huge lightbulb moment. I'm glad I know.

I used to wonder about telling my Dad that I got it from him-- and I never did. I deliberately didn't talk to him about it, because I didn't want him to put the pieces together, because in the late '90s and early 2000's all the information was so damn negative that, if he ever realized it, he would have seen himself as totally defective. Daddy liked himself and I wanted to keep it that way.

I guess the point is that, yes, you need to give him the knowledge. The knowledge is not what you need to protect your son from. What you DO need to protect him from-- and I can't tell you how, because I don't know-- is the stereotypes and beliefs that people have about the diagnosis.

People's reactions to "I have AS" have been a lot more damaging to me than having AS or knowing I have AS. I fight a constant battle against allowing society and the therapeutic community to convince me that I'm broken, defective, not capable of the things I see myself do 97% of the time. My biggest problem right now is that I live in fear that someone with the power and authority to hurt us will find out and destroy our lives-- not because I've done anything dangerous or wrong, but pre-emptively simply because I have Asperger's.

If you can figure out a way to protect him from that-- well, let me know.

Good luck.

I will do the best that I can to help.

I have three sons. One PDD-NOS, one AS, and one ASD. 12, 14 and 15 respectively.

I told all three of them as soon as we knew. We'd already been studying on it for years by then anyway. I think it can be hard if you don't know that much about it when you find out. We knew quite a lot, so it was easier for us than I suppose it is for most parents.

They all took it very well, and have never really had a problem with knowing.

A lot of how well they take it depends, I think, a lot on the parent's attitude about it. If it's devastating to the parents, it probably will be for the kids. If it's not, and treated like nothing more than a difference, it's not that big a deal. Helping them to understand it is a much more complicated and longer process though. There are, I have found, certain aspects of it that can be really hard to wrap your mind around.

I did have one strong advantage. I'm on the spectrum too. I didn't know at the time we found out about them, but once I did, it helped explain why I was able to understand it better than a lot of other people I know who aren't on the spectrum.

I found out last year. I'm in my late 30s. I feel my life could have been very different if I'd known all along or found out as a child/teenager. I don't understand why you wouldn't have been honest with him from the start, rather than presenting it like a 'you're adopted' type moment which makes it a big deal for both of you and can introduce lots of negative feelings around his 'secret'.

If he's been in an SEN school, chances are he's aware and its best to just be open and honest with him. I cannot tell you how horrible it feels to know you are different and just think its because you're horrible and unlikeable and not because there is a neurodevelopmental reason.

When I found out, I was instantly relieved, then I spent a a long time grieving for the recovery I would never have. Depending on his understanding of his life and the others around him, its best to get it out the way so you can all start talking openly about it.

I'm sorry if I sound angry about it but I think not telling him before now (in college ffs) was to make life easier for you and not your son and that's selfish of you. It's not protecting him, its protecting you.

Tell him ASAP, better early then later. Have you looked at many of the threads which talk about been used, abused and manipulated by people we thought were friends. I would tell them in a logical way, as you have done in this thread) at 2 yr old you were taking to language specialist because of..... then at age ?? you were taken to the GP has you were..... at 14 a psychologist at school examined you because of ... problems and diagnosed you with aspergers.

Moreover, back up yourself with as much knowledge as possible (not stereotypical or outdated info), he may just be on the edge of the diagnoses spectrum and maybe other SLD cover that aspects of the aspies diagnoses. On the other hand it may explain many difficulties which he is having at the moment.

He may go mad or be frustrated that you never informed him earlier, explain about the school guidelines. This is understandable (to some degree) but you have no real reason to keep it from him, you are NOT protecting him and if anything you are setting up to fail later on in life.
I am starting to cry now, as if my mother knew when i was a child and never told me through my entire life i feel i could never talk to her again for withdrawing that information from me.

I think you need a heart to heart chat with your son.

My mother, a nurse, told me when I was in college and working at a camp serving individuals with special needs that she has always suspected that I have Asperger's. (She found it fascinating that I naturally gravitated towards individuals with special needs and that I felt more accepted and helpful to society among them than I ever had in my life.) I brushed her off because the kids I worked with with Asperger's seemed to display it in different ways than I did and I did not see how being labeled was going to help me. She presented it in a way that felt like teasing though and I got the impression that she did not think that there was anything wrong with me or the kids I worked with with Asperger's and that there was something wrong with the label itself. Certainly next to the children I worked with with severe autism or complicated behavior disorders, I didn't understand why these 'normal kids' were being labeled.

College was hard. Very hard. Not academically, but definitely socially. I couldn't understand why I was supposed to 'find the best friends in my life at college' and they just weren't surfacing? Why couldn't I figure out how to bridge from being someone's classmate or roommate to being their friend? Inviting myself along with other people on their excursions did not seem to automatically make me their friend as I hoped. To make a long story short, I went into a deep depression and came off to a lot of would-be friends as being mentally unstable and to this day they avoid me like the plague.

Joining the real world after academics has been even harder.

I went back to the camp that I worked at in college and worked their full-time for a couple of years. Now, I ironically help individuals gain employment skills at a sheltered workshop. VERY rarely do we see cases of Asperger's here, but I work with one individual in his early 20's that has bounced from job to job and his parents finally asked the place of employment to help him secure something lasting in community employment. Because my frustration with coworkers that they do not seem to understand how much he is capable of and that he doesn't really belong here, I have done lots of research on Asperger's and I FINALLY am coming to terms with the fact that I do have Asperger's and that the last couple of decades could have been SOOOOOOO much easier if I had had some understanding about myself and some professional guidance.

It also explains a lot about the struggles that I have with supervisor's and co-worker's at my job. They don't get why I don't make small talk or maintain eye contact and why my verbal communication sucks and I live in a state of constant anxiety. (My dentist actually pointed out to me in the last couple of years that I have really bad acid reflux and more recently I've developed an ulcer: I always thought that that anxious feeling in my chest and stomach was completely normal.?)

Anyway, tell your son. Don't be surprised if he is upset that life in the past could have been smoother. Emphasize that the future will go smoother though if he seeks out information and resources. I understand now why my mom didn't think she should label me, but she also didn't understand how DEEPLY the Asperger's ran in my life and that it isn't just a label. Knowing the facts can be a tool for a smoother life.