OMG Autism Is SO Horrible, Never Speak of It!

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My mother is under some delusion that I should prevent my four year old newly diagnosed child from knowing that she has Autism. In mother's eyes, my child's self-esteem may disintegrate completely if I discuss Autism anywhere she can hear about it. I tell you, it took every ounce of restraint I had within me to not completely go off on her in a verbal torrent of rage.

I grew up on the spectrum. I did not know all my sensory issues, brutal honesty, social difficulties and meltdowns were due to anything but me being somehow completely different from every other human being on the planet. My mother believed that if you just sweep something under the carpet, it doesn't exist. To her, I was a brat who interfered with her selfishness. I think of how I could have coped SO much better knowing that there were other people like me out there, that I wasn't just one-in-all, completely alone, dropped here from some other planet and wondering why I was even here at all. We're ALL on the spectrum in this household. My husband and I have Asperger's and our daughter has HFA. Our son's diagnostic evaluation is tomorrow, we also appears to be HFA. We talk about this frequently. It is apart of life, as is the dialogue (stimming, meltdown, overstimulated) and it helps her to understand what she is feeling and cope with it. I attempted to explain this to my mother, but it was lost on her. Anything that is not "normal" is referred to as "that thing" or "you know what" and whatever else.

Maybe it's just my aspie-ness coming out, but I think honesty is always the best policy, things should be called what they are, and I truly believe that hiding things is just a form of denial!

Grr. Needed to vent. I've been quite the posty poster lately.

Not telling the child, in an age appropriate way when she's a little older, would be more damaging than letting her live in ignorance. She'll know things aren't right. If she doesn't have an explanation, she'll fill in one of her own. And THOSE can be pretty damning.

Ignore your mother. You are the mother now.

I think you're making the right decision to tell your daughter. The earlier she understands, the better her life will be in the long run. I too wish I had known I had AS as a child, but I didn't, so I went through life bumbling around like a buffoon.

Well, you know how you feel and that's more important right now. Your mom could be a)deluded and controlling or b)feeling a lot of guilt right now. Could be a mixture of both. One thing about guilt. If you are disagreeing with her and she is remembering your childhood, she might be hearing your words as accusations. It happened when I disagreed with my folks. If I talked about doing things differently, they automatically took it as criticism and later said that all I did was complain about their parenting.
So, she may be saying one thing and meaning something more. It's damned if you do, damned if you don't.
Welcome to the club.

Nan: I can take comfort in being the mom now and knowing what I do. Definitely, as you say, what they invent in their minds can be so much worse than the truth.

kittenfluffies: Thanks

KimJ: Yeah, my mother takes everything as an accusation, and responds with drama and guilt trips. I ignore it. It's not that she feels she was ever wrong - she'll vehemently deny and wrongdoing or errors on her part and will start throwing blame like it's a contest. In her mind, she's right, she's always right and anyone who disagrees is just an idiot. I mean, when I was explaining to her why I felt my daughter had autism, she was saying, "No, she's just fine! Kids require patience. She's just being a kid." So yeah, all kids avoid eye contact, scream in terror when they hear a siren in the distance, or come unglued about a tiny blinking light on a charging cell phone that no one else would even notice.

Unless you're going to ignore your kid(s) problems, you're going to have to tell them something - why not the truth? It's not like you can help them with eye contact / meltdowns / social skills all their lives, and expect them not to notice that the 'other kids' don't do all that stuff.

This will sound harsh, but your mum needs to grow up and accept reality, if she's to be a positive influence in your children's lives. Alas I have no useful suggestions on changing your mother's mind - I've never been able to change my mother's mind on anything, either

I disagree with your mom's stance, but I can understand why she *might* feel that way....From what I understand from talking to my own mom and her mindset on things. She said in her generation high functioning autism was not known of as much, so it was just another learning disability ... so when I first told my mom that I thought my son had an ASD she was embarrassed to tell any of her friends b/c she thought they would think James was mentally ret*d or that he "had something wrong with him" and treat him differently. She said when she finally did tell her best friend about it, she said "oh, I'm so sorry" as if he had been diagnosed with cancer. Strange...she has met him a billion times and never thought he was anything but a sweet funny kid. Too bad for us and our kids that ASD can still carry that kind of stigma. My mom was also in denial for a while with the "he's just being a kid" routine, but luckily for me she was open to reading about it and has become quite supportive.

I think it is best to tell the kids so they understand what is going on with their education, and also so they don't hear it in a worse/negative form from someone else. My friend mark has a daughter (8 years old, PDD-nos) who came home crying at the start of school this year b/c one of the kids in her class knew she went to speech therapy and he called her (and I quote) a "special ed ret*d who rides the short bus" (which she does not). She knows she is PDD so she just retorted "well I'm smarter than YOU"....but I imagine it would have hit her like a ton of bricks if she hadn't had that talk already. kids can be ral jerks to other kids. That is just my opinion though, and I do not have an older child to spreak of yet...all of this fun is still ahead for me

Kate

Let me tell you this: I only found out that I'm aspie at age 36. I can hardly convey how much I'd wish I had known this waaaaay earlier in life! I'm not sure whether it works the same way for autists, but as an aspie, one soon figures out that "something ain't right here". I'd say when your daughter is bumping into that kind of question, it's about time she is "let in" on the "secret".

Maybe it's just my aspie-ness , but I totally second you on being honest towards DX'ed kids. And if your mom really worries about your daughters self-esteem, she might want to contemplate what it's like to be put in a place where one clearly doesn't fit in, without the foggiest idea as to why this is the case...!

Thanks everyone. It's so nice to find like minds

palomino: My dad acted as if I had told him my daughter had some grave condition, after he got done with the denial part. He's still in denial, citing the recent article "autism epidemic" (as seen in the forum here) as some kind of proof that maybe they just diagnosed her and she doesn't really have it or something. I told him to read the article more carefully.

Scramjet: I'm with you. I spent my whole life unable to fit in and completely perplexed as to why. Knowing was such a massive relief, I feel like all of my life, my struggles and my feelings have meaning now. I could never hide the truth or treat it as something awful, especially since I'm on the spectrum myself.

I would tell my child, but keep it between him/her and me and the immediate family. I know people who talk about their children's issues to everyone, within the child's hearing. Complete silence isn't good, but neither is telling on your child to everyone. I wouldn't want complete strangers knowing of my issues, let alone those of any children I may have.

To me, telling should be a natural thing to do.

The bigger issue I see is what you make of the diagnosis... the label.

I hope you take some time to think about what 'being different' means to you and how you want your kids to see 'being different'.

I used to be shocked that my daughter would proudly say, "I'm Wierd!", with a huge smile on her face.
At first I would dredge up memories of my childhood and how 'bad' being different was for me.
I would spend too much time trying to convince her that going around proclaiming one's 'wierdness' was tantamount to laughing in the face of the school bully... you were likely to bring trouble on yourself.

It took a little while to see how comfortable she was/is in acknowledging her differences... her uniqueness!
I am now secure in knowing that she has a much better self-image than I did at her age.
Hopefully part of her strength comes from her mom and I always showing her support for all the positive attributes she has and things she has done.
Whatever the reason, I think she will always be cognizant of her differences yet secure in the positive aspects of them... not always dwelling on the negative.

Since my last diagnosis, I have always been straight up with her about my ADD/HD and how it affects my life.
I hope I am setting a positive example by taking responsibility for my actions... or in-actions ... , and by continuing to push forward with my life despite the difficulty of merging into this NT world.

I just want her to know that there are many ways to succeed and whether or not she 'fits' into the general population, she has her own strengths that she can take advantage of to live a happy and full-filling life.

I know this was WAY too much... sorry ... I suppose it's a bit of a hot button for me... the way folks treat differences (their own or other's)

To summarize... I support your decision to tell!

Can I send you a copy of


I think it's a wonderful children's book on AS (more adults should read it too)

I enjoy reading all the replies on this, makes me feel more sane.

I am going to get a copy of All Cats Have Asperger's for my daughter...and for my own amusement as well

I would LOVE to read "All Cats Have Asperger Syndrome." Sounds like the PURR-fect book for me!

My cat doesn't have asperger's syndrome. She is just the queen of everything and God helep anyone who doesn' t accept it. You find out what the claws are for real fast.

Btdt meeeeeeeeeeeeeeeeeeeooooooooooooooooooooooooooooooooowwwwwwwwwwwwwwwwww

i can relate exactly to you... my mother also thinks my kids and myself are just spoilt and that AS is actually just me not having time for them...(God it is a 24 hour job now...i KNOW i don't have time). My 3yr old AS son is non verball and i am signing to him and my mum hates it...beacause he is not deaf there is no need..
But the only people who really know your kids are you and your hubby...
Sorry but ignore your mother and trust your own instincts.
I also am at the stange of trying to tell my almost 8yr old daughter about her AS because she is starting to see differnces between her and kids at school...but....it is hard... i have no idea how to bing up the subject beabcse in a way, i feel that telling her may make her become more confused than she already is...I don't know
Obviously I am as confused as you (if not more)
Sorry for no help at all!! !! !! !! !! lol

mumoftwoaspys: I'm having similar issues with my mostly non-verbal 2 year old, and we're signing too. Some of my family seem uncomfortable with it. I can't understand their problem. Sign language is a wonderful skill to have, it bridges that communication gap and the kids think it's fun

I guess as you say, we know what's best and we should trust our instincts.

As for your 8 year old, I think what would ahve helped me is just knowing I wasn't alone. I swear I thought I was the only kid in the world who felt the way I did. Mostly she needs your understanding and acceptance. With that, while other things can and will be a challenge sometimes, she will have a firm foundation and she'll be just fine. Aspies tend to be pretty smart about discussions like this, so I think whatever you tell her will be fine. Maybe get her some reading material and offer to answer any question she has. Someone recommends All Cats Have Asperger's. I'm buying a copy.