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

Post Reply New Topic

Thank you for sharing your story. I am so sorry you had such a hard childhood. I hope one day your parents will get the help they clearly need. In spite of them you have grown to be a thoughtful adult. You should be proud of all you have acomplished.

My son is 3 1/2 and has not been formally diagnosed as yet. We plan to tell him as soon as he starts asking questions. For now, we feel it's best for him to enjoy just being a kid.

I agree, 3.5 might be a little early

Mine never told me I had a disability until I was maybe an adult. Only reason I found out at age 15 was because I over heard my mom talking on the phone about me and plus she was in this beta secret sisters group and I saw she had this binder with her with profiles in it for each member and I saw hers and she said she has a daughter with a disability. She never told me I had ADD or dyspraxia or possible OCD or sensory issues. She didn't tell me anything until 6th grade and it was AS she told me and then she told me about anxiety and sensory issues I have. She did mention something about my balance and how I process information so that was why I was in occupational therapy.

But was I upset when she never told me? No. I was not happy when she told me what I had wrong with me. but I guess every child is different because people have said on here they would be mad of their parents never told them and they kept it from them. But I am the opposite. I would have rather not found out as a kid because I hated being different so the last thing I needed was being told I was broken. Well telling me what I had was like telling me I was broken and not normal. But that is just me.

I even said at age ten what was wrong with me and why do I have to be so different and not normal and they kept telling me I was normal and nothing is wrong with me. I was diagnosed with ADD back then. Even in 5th grade I would say the same thing and was even saying I wish I could trade my brain for a different brain and I had other labels then too. But yet in 6th grade mom decided to tell me I had Asperger's. then she mentioned anxiety when I was 13 and then decided to mention OCD and I was like "great more stuff wrong with me" I even felt the same way about ADD at 14 when i found out what it was and self diagnosed myself with it. I didn't even like hearing in 6th grade why I was going to occupational therapy because I felt so abnormal when mom told me the reason why. But I think I asked and she was honest about it. She never said the words dyspraxia nor sensory integration dysfunction.

League Girl,

What could have made it better for you? I ask because my son is going into 6th grade and he is very aware that he is not like other kids. Are there things that we as parents can do to help with this? Better ways to communicate it? Things that are not good to say? I have never tried to reassure him that he is "normal" because...well, he's not and I think it would be insulting to his intelligence and belittling to his experience to gloss over the fact that he struggles. But if you could turn back the hands of time, what do you wish your parents would have done?

This is not meant to be accusatory at all. I want to understand because my son is entering into the same age range you are talking about.

When my son is old enough to notice his differences, I plan to tell him. It's part of who he is, really. Not knowing didn't help me much as a kid. I just blamed it all on myself and accepted the lazy, disorganized, slow, weird, clumsy labels as facts.

It makes as much sense to me to hide a diagnosis of an ASD from a child as to try to hide Cerebral Palsy from him. People with Cerebral Palsy can live well and accomplish great things if they get the help they need. And although they'll be sad sometimes that they can't move the way other kids do, at least they'll know it's not through anything they did wrong. This frees them up to concentrate on the things they can do.

I'm sorry about your experience. I'm glad you still love your parents despite the mistakes they made. Luckily it's not something I have to break to my son because we just talk about it all the time. He doesn't understand what it means, but we don't keep it secret. I want him to know there is a valid reason for his struggles and that he's not the only one and that it's not his fault. I'm sorry blame was put on you as a child and that you didn't understand why.

Thanks for all of the kind responses. I agree that it's best to eventually tell any kid who has a spectrum disorder about it in a gentle yet straight forward way. Knowing exactly when can be tough and I think that it would vary child to child. My case is a little extreme I guess due to the issues that my parents have plus the fact that my brother died shortly after being born, which was just before I began having all of my special classes and so forth. I think they were angry or felt cheated that they felt they were 0/2 in what they'd been expecting.

One suggest is to point out the positive traits of autism to your kid - these are often overlooked.

Tell them most people with PhDs have obsessive interests, for example.

I think you are an amazing person. i wish you all the best

Thank you so much for sharing, and for saying this. We are open about our child's autism, and while there are views on "how young is too young, what if child uses autism as excuse not to try, etc." -- we speak about autism very freely in the house (we don't use code words, we don't say "A word", etc.) that our goal is to show by attitude that difference comes with its sets of challenges and strengths and the key is to know yourself when navigating life.

We don't ever want our child to feel "there's something wrong" with him because he may see his peers easily do certain things that he has to try very very hard to do, or worse, to blame himself. He has a different subjective experience of the world! Our job as parents is to understand ways to teach him to use his strengths and manage the challenges that aren't insignificant but does not make him "broken" or "less than." The reality is that society likes to lump people together, to categorize, to exclude... especially what it doesn't understand, we aspire to teach him to be prepared for reality while helping him develop a strong sense of self and inner resources.

It's incredibly affirming to read your point of view.

Thanks OP, for your story. I'm glad things are working out better for you now.

My daughter is 6 1/2 and she is getting a diagnosis (or not) in 2 weeks. I've tried to be as open as I can with her (given her age). I intend speaking with her about the result and explaining it in simple terms. She knows she's different, without it ever being pointed out to her, so I don't see any point in holding back. It can only help her to know that I understand and that I'm on her side.

I can contrast this with an acquaintance, who has a daughter who is 2 years older than mine. I discovered by accident that the girl was possibly on the spectrum, although I knew the mum and her daughter well and had already suspected that she was. A teacher blurted it out to me and said I should speak to the mum for advice on discipline, etc. The mum was a little upset that this had happened, as she hadn't told anyone that her daughter had been partially assessed. But she agreed to speak to me. She told me that she had stopped the assessment when the words 'autistic spectrum' were mentioned. She didn't want it on her daughter's record. She seemed to think it could go against her when applying for jobs. I don't know where she got that idea from. The diagnosis would go in her medical record, but prospective employers do not have access to such things. Anyway, the girl has quite obvious Aspergers, moreso than my daughter, I think. She looks confused and I feel deeply sorry for her. Her mum is trying to train the Aspergers out of her. She told me she was much tougher on her than her younger daughter (who is clearly NT). The quirks are punished, e.g. for acting 'babyish', by jumping up and down with excitement. This is so sad. The girl is delightful and I would be full of pride, if she was mine - just as I am about my own daughter. She couldn't even see any positives, when they are so obvious to anyone who has met the girl.

I can see a bright future for my daughter and I'm in a better place, emotionally, than the other mum. Needless to say, I listened, but never took any parenting advice.

My daughter isn't even 5 yet. I've told her she thinks differently, thats all. The label would be meaningless to her.

I have to tell her something when other kids are already noticing (the older ones, not those her age) and picking on her.

How very tragic. I love that my daughter gets the happy flappies. I think it is a thing of beauty that she feels her happiness in every cell of her body like that. In fact, I think we should all hop and flap when we are happy. The world would definitely be a better place.

Lots of things about my kids would probably be punished in other families. And some of them are the things that I cherish the most in my kids. The thought has actually kept me up at night--knowing that somewhere a kid just like mine is sad, and potentially abused, because they were born to the wrong family.

There is definitely a fine line. We all live in society and there are repercussions for not abiding by societal "rules" for ASD and NT alike. The line gets stomped into oblivion, however, when a parent's concern for blind conformity to all "norms" prevents a child from being who they are. I will not allow my daughter to demand that everyone play by her rules all the time (which is a behavior of hers born of her autism), but I would never ask her not to happily hop and flap (which is certainly not the norm, but not in anyway harmful to her or disrespectful of others).

Jojo's mom here,

I hate that your are still living in this situation and that you have suffered so much needless abuse. It is not good for your mental or physical health. Can you check with social services to find if any low cost housing assisted living is in the area? If not have you thought of moving to an area where you could get support to live in a non abusive situation. Best of luck I will not be so silly to tell you not to focus on the past. You will not ever forget and the scars will always be there, but focus very hard to live in the present moment and that is where you will find healing.

Jojo

It is sad, but please don't lose any sleep over this girl in particular. When I say 'punish' I mean she is sent to her room, to 'calm down', i.e. she gets a time-out. Not that I agree with her mum doing that either, but she's not being smacked or shouted at. Like you, I frown upon any sort of punishment for this sort of thing and the only traits I truly wish to see gone are the ones that may cause my daughter to be harmed or the ones that cause her to be disliked. I think that this girl is being treated in the manner that most kids with that sort of behaviour would have been subjected to in the past (before Aspergers was known about and anything like that would have been observed as naughty). The mum and dad are good parents, in every other respect, and really care about their kids, but they are going about this matter the wrong way. I hope that the next time I speak to the mum, I can tell her that my daughter has been assessed. I wish to impress on her how well my daughter is doing, with the support and advice we're getting, and hope that she'll come round to the idea that getting help is not a bad thing at all. I will not try to persuade her in any way, I just hope that she'll follow my lead.

Hi,
I can relate to your post in some ways. The 'she'll get over it" thing really gets me. I have found myself saying, yes she would, if she were like other kids. Recently I signed my daughter up for horseback riding lessons. I wanted it to boost her confidence since her self esteem is very low. She wanted to do it so we gave it a try. Once she realized that she had to put her hand in the horses mouth to put the bit in she was like, no way. Even having her hands dirty from brushing the horse was a big deal. I wanted her in the special riding class that the stables website said they offered, only to find out that they hadn't implemented it yet. The teacher said. Oh, she can do it, and in fact overcame her fear of heights and got on and actually rode. The "grossness" of it all is just too much for her though. The instructor said to me, "if you let her quit, that is just confirming to her that she can't do it". This woman claims to have been a special ed teacher. Seems not many teachers understand these conditions. She does love archery so that is something she can do outside of sitting on the computer all day.
When she was younger she would have meltdowns at school if the routine changed. I'd have to coach her in advance as did her teacher. She. Couldn't understand why she couldn't go on the field trips if parents weren't invited to go along. She's 12 now and some thing have gotten easier, but new things have cropped up. I haven't officially told her she has ASD yet, but she knows she's different. She also has OCD and sensory processing disorder, which I thought automatically came with ASD.
The more I think about myself the more I am convinced that my daughter inherited her issues from me. I wish I had known .