A Note to all parents of kids w/Asperger Syndrome/NLD/Autism

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First off I'd like to say that I hope this message finds all of you happy and well.
I'm 28 years old and as one would probably guess, I suffer from Asperger Syndrome. I have no children of my own, so I can't say this from personal experience, but I have to imagine that it's pretty jarring when a specialist diagnoses your child with an autism spectrum disorder. While there are many things a parent can do from that point on, I have a piece of advice - Please, please be honest with your child and keep them informed about themselves and their conditions.
My parents chose to hide my diagnosis from me. From my earliest memories, I have always had difficulties in nearly all spheres of life, most notably in those that come the most easily to most people. At the age of four, I was removed from my nursery school and placed in a class for severely handicapped and mentally ret*d children. At the time, my parents were furious with me, telling me I was there because I didn't try hard enough and was taking away their opportunity to make friends with the parents of "normal" kids.

Eventually the program through which the class was run lost funding and by kindergarten I was back into mainstream education. I was in several special ed classes on the side (adaptive gym, occupational therapy, and speech therapy, academic assistance, etc) This, combined with my difficulty in reading social skills and my awkward manner resulted in constant and severe bullying throughout my school years. I always would ask my parents why I had to be in these programs and why I was always being pulled into the social worker's office for testing. The response would always be either that I was bad/lazy or "your muscles haven't caught up with your brain" - which I never really understood since by 2nd grade all of the therapy and special ed I was receiving was not physical in nature. Along with my social and academic struggles, I also had a speech problem in which I would frequently whisper the last few words of any sentence I had spoken. For example, if i were to say, "I just bought a bag of bagels", I'd whisper "of bagels" immediately after finishing my sentence. This was not something I did on purpose and I still catch myself doing it every now and then, but whenever I did it as a kid there would be hell to pay. My parents insisted that I was doing it to annoy them and to make them worry.

During this time, my parents forced me to try several sports, all of which I failed at miserably and attracted even more bullying. Every time, I'd get the same grief about depriving my parents of the chance to have friends, since all the other parents who saw the games would know them as the "unpopular kid's parents". I went through my entire childhood always being a disappointment no matter how hard I tried and never understanding why. By the time I reached high school, I had adapted to different ways of studying and managed to get good grades, but was still lost socially. As with most kids of that age, I was developing an interest in the opposite sex but I was just as unpopular with the girls as I was with anyone else. My father would frequently accuse me of being gay since I couldn't get a girlfriend. If I ever mentioned I was going out, I'd be met with the reply "Where, do the fag bar?" Around this time, they began to frequently mention my brother who died in infancy and say how they wish he could have been the one to survive because then maybe they would have something to be proud of.

As soon as I was old enough, I started taking jobs after school. However, they seldom went well as I would have trouble performing the most simple of tasks. I couldn't understand why this would always happen as in principle, I would know how to do things, I would always just leave out a step or forget something so obvious that I'd (not literally) be kicking myself for days at a time.

Eventually, I went on to college, but since I commuted, it was basically a similar experience to high school. I pretty much had no choice but to commute since my mother's depression had become severe enough at that point that she was nearly a perpetual suicide risk. One day as I was finishing up my freshman year of college, I was applying for a summer job for which I would need to present my birth certificate. It was when I was looking for it that I stumbled across a box that was filled with report cards and other papers about me from my earlier school days. I found several papers that included correspondence from special ed teachers and tests and saw things such as "this student has a disability that will severely limit them in one or more major life activities", "this student non-verbal learning disorder", "this student has a significant disability" and similar things. When I confronted my parents about this and asked about what it all meant, they were beyond enraged and told me I had no right to be looking at those papers.

I eventually began to research Non Verbal Learning Disablity (NLD) and saw that I fit most of the description and could very much relate to the experiences of other people who have that condition. I started to see a therapist who diagnosed with with Asperger Syndrome and it allowed me to understand myself my life much better. However, the damage had already been done as I had spent my life developing unrealistic expectations and found myself as an unemployed 20-something living with his parents and aside from the ability to drive, I had no more independence than I had at the age of 12.

Had my parents been honest with me from an early age, I would have grown up with more realistic expectations, I would have been much more conscious about my social interactions since I would have known my limitations, and I would have chosen a career path that would have been more toward what I can do and not what I can't. These days my parents know the cat is out of the bag and I know about my disorder, but there is still a great deal of anger over what I haven't achieved. My father still thinks I'm gay and my mother constantly berates me for depriving her of grandchildren. At my cousin's wedding this past summer, she sat around saying how much she wanted to kill herself and when my aunt asked why, she said "Because you have that (pointing at my cousin with his new wife) and I have this (pointing at me)".

Now, at 28, I'm doing a little better since I have an understanding of my condition and I know what works for me and what doesn't. I'm able to more realistically evaluate my behaviors, abilities, and the impression I give to others and as a result I now do have a few good friends and I'm self employed in a field that is more suited to my strengths. I don't make enough money to live independently, but at least I can cover my personal expenses while living at home. Life is still painful and far from being enjoyable, but at least I'm on a better road now than I was in the past. I just wish that my parents had respected me enough to be honest with me, because I now feel like I have completely lost the first 25 years of my life. I know they had their reasons, and I think their belief was that if I didn't know the truth, I'd just knock myself into a wall until I tried hard enough that I would overcome everything.

I love my parents very much but they did me a great disservice by not being truthful with me. Had I known the truth, a lot of pain, frustration, failure, and misery could have been avoided. I can't get my childhood and earliest adulthood back, but I can give you this advice - Please, PLEASE be open and honest with your children. As hard as it may be (and it will be very hard at times) please know that their behavior is not intended to be annoying and that they aren't purposely failing to live up to expectations. Let them know that you love them and that they have a condition that will make life harder, but is not a death sentence.

Last edited by RShawcross on 07 Jul 2012, 9:36 pm, edited 2 times in total.

Wow.

I am very saddened by your experience. I have often felt that were my children born to someone else, that would have been their fate and it has always broken my heart to think of kids growing up like that.

It took courage for you to share your story. Thank you.

My son has ADHD and NLD. I have always been upfront with him insofar as I have always acknowledged that his brain works differently than most of his peers. I have always acknowledged him when he said he doesn't feel like he fits in with the rest of the kids. But I have never told him his actual diagnosis. I want him to know that he is really different than others, its not just in his head, but I also don't know if I want him to attach who he is to a label. What are your thoughts on this?

My daughter is mildly on the spectrum. She has never indicated any understanding that she is different than other kids, so I have not said anything to her yet. When, in your opinion, is it the "right" time to tell? Do you feel I should wait until she notices she is different? At this point, she mostly just thinks she is superior to others. Unfortunately, she is really cute and it's all she hears all day and she is academically advanced and artistically gifted. And completely clueless to how socially clueless she is. It seems like until she notices she is struggling, wouldn't it just upset her to know?

Thanks for any thoughts you can give.

I have to admit, that's a really tough call to make. How old are your son and daughter?
One thing that I think is very important is that both of your children are aware of what their strengths and weaknesses are. I think this is incredibly important because it's never too early to plan for adulthood and a career. In my experience, most people on the spectrum seem to have pockets of talent and narrow, intense interests. If there is any area that your kids have special talents in, I think it might help to encourage, but not push them into it (pushing them might make it seem like a chore and not fun) and to help to nurture those talents. It'll help them to get on track with a possible career path and to build self esteem as well when they see that they can be successful at something important.
I think it is important that at some point, you do tell both children about their disorders. Since I don't know their ages, I don't know if the time would be right because a certain amount of maturity needs to be there for them to take the information constructively that very young children are not likely to have yet. I would say that late elementary school/junior high school would be the best time to get more specific with them. It's a time of changes and it's a time when a spectrum disorder will become more apparent and struggles will be faced. Equipped with the right knowledge and understanding though, these will be struggles that they can overcome.
I hope this advice helps, but bear in mind that I'm not a parent myself so I haven't really experienced your side of things. If I've said anything offensive, I apologize as it wasn't intentional.

Thank you for sharing your story. It is so helpful for us to hear the perspective of adult Aspies. We often have discussions here about how and when to tell our kids about their diagnoses. What your parents did to you is wrong on many levels. It's horrible that they refused to share your diagnosis with you and it sounds like there was plenty of other forms of mental abuse going on as well. To top it off your mother suffered from depression that perhaps was not well treated? That can cause some serious bad family dynamics.

My mother probably had some issues to begin with, but her depression got much worse when she was single handedly left to take care of both of my grandparents who were ill and dependent for many years before they died. Her intentions were always well, but she has abandonment issues and has trouble not taking it personally when people are sick or disabled, almost as if she feels they're doing it to get at her.
She would often scream and yell at them for not "trying" and many of my earliest memories revolve around sitting in the crib and hearing her scream at them for hours on end. My grandparents were some of the most genuinely good and kind people who I ever knew. I was very close with my grandfather (he was much more of my primary male role model than my father was) and when he developed Alzheimer's Disease it was a sad experience to see him slip away and to witness my mother yelling at him for it. I think she very much wants to be a good person and to help others but has a lot of trouble not taking things personally and staying under control emotionally.
My father is also a good person at heart but is almost definitely autistic as well. He has never been able to socialize well and constantly offends people and doesn't realize it, as well as having issues with hygiene and organization. He was bombarded with abuse in childhood and it's had a devastating effect on him. He has repression and rage issues and has had trouble keeping jobs and dealing with my mother's anger. Growing up he would take his frustrations out on me as there was no other available outlet.
Things between myself and my parents are still very difficult but now that I've learned about my condition and have matured to the point where I can view their actions with a (sometimes) less critical eye I have more patience with them and am able to handle their behavior better. It still is very difficult though knowing what they wanted for me and knowing what they wanted me to do in life and having achieved so little and deprived them of what they really wanted most in life.

This is a really good post for parents! I wish my parents had available the information to get me help growing up, so that our expectations could have been realistic as well. Just trying to do everything like other people doesn't work and ends in frustration, embarrassment and depression.

Thank you for putting it so well, I hope parents take it to heart.

You've become a very understanding person. It must be very hard not to stay angry at your parents, even knowing how they got the way they were. I think the biggest problem in your family was one we've been working on... accepting people for what they are. People always seem to have things they expect from others and act as though it's a personal affront if they don't meet the expectations, and think they're encouraging the "bad" qualities if they accept them. It's hard to do... but it's a shame when no one even tries, and even choose to punish people for not being what they want them to be.

Thanks for sharing. As parents, we crave for insight into the decisions we make that will help/hinder our children as they grow up.

My son is 5, and I have been debating this question--how much to say, when to say it, how to say it. He has started asking more questions. He has been diagnosed Aspergers and Sensory Processing Disorder. He goes to speech therapy and occupational therapy. So, most of his questions circle around 'Why do I have to go to this special class?' He is a smart kid, and from the beginning I have wanted to respect him with honesty.
I haven't told him he 'has Aspergers', because I myself wonder if his diagnosis would change if he were re-evaluated and then what would we do with the label?
Instead, I found a great video online and explained to him about neural 'pathways' and how some of his 'roads' connecting his senses and brain are 'bumpy' and he needs an exercise program to help smooth them out. I've also told him that, while this is a 'weakness' he has, that he has some really great strengths. And we've talked about what those are-- pictorial memory, design/building, etc.
We've also talked about how his mind may think/work a little differently from others, but how that is ok. However, it is unique and he needs help with communicating that to others, and so he needs the speech therapy. I asked him if he thought he or his 3-year old sister was better at talking and he said--'my sister'. So, he does have a self-awareness already I think that needs to know what is going on.
We know he already gets frustrated on various levels with his struggles to communicate or socialize, so . . . you are right . . . I think the more information we hold back at this point, the more likelihood for depression or frustration there will be. He seems almost relieved when we talk about being different or have certain weaknesses. (Yeah, mom, he says--you aren't very good at math, you know.)
I know as a parent I was incredibly relieved to have a professional validate my concerns, so I can imagine he feels the same way when his feelings of oddness are validated, and yet his strengths are commended.

So sorry for rambling . . . anyway, it sounds like you have been able to rise above what you went through. Not to say it doesn't still hurt. It breaks my heart to hear it. But the fact that you are using your experiences to help other parents . . . thanks, that is a great strength . . . and keep it coming.

WOW, I am so sorry that your parents placed blame and shame on you. If they wanted to make freinds, that has nothing to do with YOU. Children arent responsible for their parents ability to make friends or not. And if you are gay, so what? My children are MY children, gay, striaght whatever they are. I cant even imagine saying some of those things to my kids. It pains my heart to know that you were treated as you were.

I plan on telling my 6yo son about his Aspergers when he seems ready. For now, he has never wondered why he gets speech, OT and social group. He assumes everyone does! He was alo born with a cleft lip and palate, and assumes everyone has one too. As recent as last summer, he asked me how old I was when I got surgeries for my cleft, and asked when his sister would have surgery for hers. I had to esplain that not eveyrone has a cleft, some people have other things, and some have none that require surgery. I have to admit he was kind of baffled by it!

Thanks for sharing with us, and caring enough to let others know about your experiences in hopes to spare other kids the same.

My daughter is almost 7 and my son is almost 11.

Absolutely nothing you said was offensive. And the fact that you are acknowledging that the fact that you are not a parent is relevant to the discussion is actually....well...impressive. I think sometimes people on both sides (parents who are not on the spectrum and adults on the spectrum who do not have kids) forget that they are viewing everything from a limited perspective. Yes, I believe that other autistics know things about my kids that I cannot know. And Yes, I believe that I know things about my kids that other autistics cannot know. I'm rambling a bit now, but I appreciate that you see the distinction.

Wow I am so sorry for your experiences growing up. If your mom was struggling with depression she probably did not act appropriately in response to your issues.
Getting a dx about your child is devastating, and some parents don't handle it well. I never was sad for me, but I was sad that my son would have so many extra obstacles in a life that is already difficult at times to navigate. I think people, including children, should be given information about their struggles at an age appropriate level and way. My son has known he is on the spectrum since he was little.

I have told him since he was little:

Things will be frustrating because you body doesn't always work right, but you can over come many of those issues with a lot of practice and determination.
You will feel all kinds of things through this process; joy, frustration, anger, happiness, sadness ,etc. It is OK to feel those things. You just can hurt yourself or others as a result of those feelings.
You will also need to recognize when something is not worth your time or effort, you will have to choose and pick your battles.
Other people will not struggle as much, but others will struggle more. Your struggles are yours and what you do with them is up to you.
I am always here to help, and if I should not be someday, never be afraid to ask others for help.
There are good people who would be happy to help you at anytime.

I can relate to most of that post.

I too am not a parent, but do believe my parents should have looked a bit closer into the confusion I was having in life, and done something a little bit more proactive. I too, recently found some old documents; in my case I went to the children's hospital to get my records for a physical disability I have, and I went through the whole file (a huge file). I found manymanymany references to my psychological state, many bits of advice that I should have seen a head doc, etc etc. Many references to being put in a corner, or denied going to a school function / camp, etc etc.

No references to things like my school bus driver calling me names all thru grade four, but that's one of those things I never shared with anyone - though I might have if anyone had bothered to listen... or ask...

And I think my father still wonders if I'm gay. Hell I think my best friend wonders the same thing at times. Not that it matters, really, other than if THOSE two people think I'm gay, how am I ever going to convince girls I'm interested in them ???

As to when should you tell your kids / I don't think there's a set time or place, it's the parent's call BUT I do think
1. If a medical or educational professional is pressuring you to tell the kid, think about it a bit harder.
2. If the kid has a serious setback in life (ie a girl or guy he/she was crazy about (teen years) dumps him/her for no reason
or a best friend shuns him/her, or a job fires him/her and they can't figure out why
3. IT SHOULD BE brought up before high school is over / At the end of high schoool the kid is going to fall into the BIG BAD WORLD out there. Be it college, university, or job, or whatever, THE BIG BAD WORLD is going to chew him up. Don't let him go out into that without EVERY POSSIBLE TOOL for success in his pocket. This is when typically kids go out on their own, away from the umbrella of HOME SAFE HOME> teach them to deal with their differences BEFORE they are "scheduled" to leave the nest, and early enough that they arent dealing with NEW DATA at the tsame time as tehyre dealing with NEW LIVING SITUATION.

Sorry for all the capslocks, I didn't get much sleep today and prolly shouldn't be posting / will edit this tomorrow.

I worry about when my kids leave the safety of my home, even though we are years away from that. I could never dream of not discussing their issues with them before they leave. They need to know where their weaknesses are and how to compensate for them. I do think sometimes kids who learn to fly under the radar are at risk for not being told. But I don't think parents realize how much they have helped them fly under the radar, ykwim? What about when they are not there?

I do a lot to "manage" my kids' issues and support them. As they get older, I am trying to do that less, but it is very hard. They already have to work harder than others. Sometimes I just want to help them avoid having to work even harder. An example of what I mean by manage their issues could be this: we were visiting my parents awhile back. They have a little bridge that goes over part of their pond. The yucky, swampy part. My daughter and her cousin were running over it. I told her only to walk. Everyone treated me like I was some overprotective freak. It wasn't that I was worried about her falling in. I was worried about the reaction she would have to having water in her face and touching something slimy. It would have sent her into serious meltdown mode and it may have taken her hours to recover and then she probably would have never walked over the bridge again. People don't seem to understand that "she'll get over it" doesn't really apply to her. No. She won't. Not like a typical kid who doesn't have sensory issues at least.

I prep them for everything they do. Rules to follow. Rehearsing "what if's" to make sure they understand how to handle the most likely things they will encounter. When they leave, they won't have that. It makes me really worried.

making them practice what ifs is smart. they'll get into the habit of doing it themselves.

I'm thinking along the lines of my own troubles
keeping and holding a job: Not knowing that my speech, inflections, body language etc were not 'normal'; not even realizing that this was an issue I had to pay attention to in myself, etc has caused more trouble at work than I ever realized. Once I found out about that one specific issue, I looked back at all the times I've been fired, and seen that probably played a HUGE factor in every trouble I've had in the job world / every time I got fired, and ddin't understand WHY... I just always attributed it to people being bullies and a##%holes and all the world's out to mess with me. And I ddin't understand WHY. Why me???? Now that I DO know it, I can at least see that it isn't actually true; but at 36, with noone to help me find training for this problem, and as an adult in an adult world, NEW to the idea that my poses/voice/etc doesn't come across the way I expect it too / the way I think, thought it does... can you IMAGINE how disorienting that is?

And it was obvious in my childhood med files that I would encounter issues in this regard as I grew up. But
1. My father never spoke to me of this, the doctors never spoke to me of this.
2. Friends, employers, etc sometimes spoke to me of these things, but not in any way that I 'heard' them....
3. I finally came across it by myself. With a bit of help from an ex girlfriend, and a lot of soul searching/ but even then, the hard facts and reality of how different I am are still sinking in YEARS after that /slap in the face/ .. and even at that it wasn't until last year that the FULL truth of how much my poor prosidy and body language affects my everyday even came to my active attention. (I hope it's the full truth).

I sometimes wonder if more realizations are still just around the corner. Imagine seeing yourself in a mirror for the first time ever in your life, in your 30's. Having done (or at least tried) most of the normal steps in life (maybe a bit late). Imagine you find out that people knew you'd never seen a mirror, HAD the mirror waiting for you, but had never pulled it out and offered it. And suddenly, you look into the mirror and you notice you have no ears. Well golly, now you know why you've been treated funny on all those occassions, what all those weird looks you got were. Why ddin't anyone tell me I had no ears? Ever? I mean, it explains so much.... But I'm in my THIRTIES and just finding out... and seeing akll those years I spent knowing I was different and not knowing why. If I'd know as a child that my ears were missing, I'd have learned to deal with that fact AS I WAS GROWING UP, and at least would have known what I was dealing with. In my thirties it's a bit of a shock to find out. In my thirties it's a bit of an annoyance to find out that there are mirrors (professionals who know about the condition, other people who have the same stumbling stones, and advice about it) and those mirrors have been PURPOSELY hidden from me. It's a bit difficult to now have to adjust to living with something that I've suddenly and violently been made self aware of. Had I grown up knowing that I had social stumbling blocks ahead of me, I could have understood my situation better, realized that my life would require extra planning to get around my stumbling blocks. I wouldn't have grown up as carefree, but I would have grown up better able to cope with adult life... which, oho! takes up a good 70-80% of the lifeline... imagine that.

/end rant

Thank you for sharing that, OddFiction. I can't really imagine what it has been like for you, but I can promise you I will never let my kids find themselves in your shoes. While I know that does nothing to help your situation, I hope you realize the importance of speaking out because you can help today's awkward kid from experiencing the same thing. That counts for a lot.

The problem with all the "rules" and the "what ifs" is that I cannot anticipate everything and sometimes I think it makes the stress of the unexpected violation of expectations even that much harder for her to deal with. Sometimes I wonder if I am making her more rigid and less able to adapt. But the truth is, if I can't run through scenarios with her and help her learn it by rote, then I have no idea what else to do. She simply doesn't learn things incidentally. It all has to be spelled out. Her one saving grace is that she generalizes a lot better than many autistic kids her age do.

Listening to what adults on the spectrum have to say helps me in my quest to help my kids achieve their full potential. Learning what not to do is sometimes even more beneficial than learning what to do.

Knowing can be a curse and a blessing. If I knew maybe it would have kept me from feeling so depressed and wondering what was wrong with me and eventually drugs.

On the other hand, ignorance can be bliss. Still, better to know.