Advice:Disclosing daughter's diagnosis to friends and family

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Hi folks,

I'm a self diagnosed aspie. I only realized I'm on the spectrum after my daughter was diagnosed. Most of my family and friends don't have any idea I'm likely an aspie and I've managed to live a very successful life so far. I was bullied and teased quite a bit as a kid but since the age of about 25 things have improved dramatically. I have a well paying job a beautiful wife and 2 gorgeous kids. I work in a very demanding career in which the general public would not expect someone on the spectrum to have.

My 4 year old daughter was diagnosed about a year ago and we feel she is likely similar to me. She is very bright but she does get quite dysregulated. She also isn't picking up social boundaries and cues very well, but she is amazing with puzzles and drawing. Very much like I was when I was a child. She also has a slight speech delay but I was very advanced with my language.

I have a dilemma as I want to respect her future wishes. I don't want society to define who she is and influence her self image from a young age. I know if I was diagnosed at a young age, the kids I went to school with would have been relentless and made me feel worse. I'm glad no one knew and no one knows that I'm most likely on the spectrum. I personally am proud of the fact that I'm an aspie as I see it as my super power which has enabled me to do things others can only dream of. But I know that in my career, I would not have been allowed to progress if anyone suspected I had this "disability" My extended family are very competitive and love to gossip and spread rumors. If they were to find out my daughter is on the spectrum, they would tell the whole world.

I'm leaning towards keeping the diagnosis to only those who need to know, and just tell our friends and family that my daughter has a speech delay and she is improving each day. Our therapists have told us she will most likely have a very normal life as long as we keep up with the interventions. I know some people will suspect she may be on the spectrum, but I don't want to make it known to everyone as I feel like it's my daughters decision to make whether her cousins and friends know about her condition. I know I definitely would not have wanted anyone to know if I had a diagnosis. My wife hates the fact that we are not telling anyone as she feels uncomfortable trying to explain my daughters slight speech delay and her dysregulation to people, but I personally don't care what people think and I respect my daughters right to keep the info secret if she choses to. Once we tell people, we can't take it back. I know society is becoming more accepting and empowering in this day and age, but part of me is really conscious and respectful of what my daughter would want when she's older and can make this decision herself.

Any advice from fellow aspies and or parents in the same situation would be greatly appreciated.

Don't make her autism out to be a horrible disease, which it isn't.

I agree with your inclinations. "Need to know" is the way to go. So if she is having trouble at school or with kids, an informed therapist may be needed. I don't trust the school system to keep ANYTHING confidential. But I don't think you need to worry too much about others guessing she is on the spectrum. Most people aren't that knowledgeable; at most, they will think she is a know-it-all or princess (for needing certain things to be a certain way).

The slight speech delay is a good scapegoat if you have to explain anything, you can leave it at that.

As she matures, you will want to determine how much self-knowledge she can handle. Once she understands her diagnosis and what it means, she may choose to disclose. She may choose that at an earlier age than is wise - because autistic people are notorious for oversharing.

A secondary issue is your wife's feelings and needs. Is she the primary adult - staying at home while you work? You might not understand how much emotional support she is needing. Accepting the special needs (and there are some) of any autistic child can be a constant and draining challenge. Your wife might need to be able to talk about this challenge with relatives and friends - this is a normal and healthy way of coping that is particularly used by women. So you and she should have continuing conversations about optimal disclosure and also, you should be very open to whether she is needing more emotional support, or even everyday support such as you staying home one day a week to give her a break. Keep an open mind. Remember that "your" way of coping may not be "her" way of coping, and yours is NOT "better" than hers.

Sounds like a good plan. I have 2 daughters. Both had some Aspie traits. I raised them how I was raised and they turned out fine. One is a medical doctor today and the other has a degree in Biomedical Engineering. So here is some advise:

If you have a son, make sure he has some training in self defense and also give him permission to defend himself.

Integrate work with schooling. Teach your children all your and your wife's skills at an early age.

To protect my children from bullying I fashioned for each of them a coat of invisible armor. From the time my daughters began to walk and talk, my wife and I relentlessly began to teach them Life Skills.

Consider this, most children start with the same box [Asperger and neurotypical]. But every time an Aspie child is ridiculed, they are told they have no common sense, every time they are told they are stupid or worthless, an idiot, their box gets a little bit smaller. If the box gets compressed too small, the box breaks and explodes. The goal is to help the child expand their box, to be everything possible that they can be. One approach to expand their box is to give them skills, hands on skills, real life skills.

Every time an individual learns a new life task successfully, the individual becomes more confident, feels greater self worth and value, is better able to withstand non-constructive criticism and psychological abuse. Essentially, the individual is expanding their box.

Life tasks are normal tasks that individuals (such as parents) use in their normal life. Life skills can be almost anything. They can be making a scrambled egg, or making a sunny-side-up egg, or driving a nail into a board, changing a flat tire, washing the dishes, balancing a checkbook, using a cookbook, making cherry jubilee, ironing their clothes, fixing a broken dishwasher, answering the phone, unclogging a toilet, changing a light bulb, making a cup of coffee or grinding coffee beans by hand, coloring Easter eggs the old fashion way or finding Easter eggs buried inside or at the end of a movie, grinding grains of wheat to make flour and then using the flour to make a loaf of bread, creating a spreadsheet or sweeping a floor. These life skills can be very mundane or very intricate task. There are millions of life skills that can be learned. They can be outdoor survival skills taught in boy scouts or girl scouts. Every skill makes their armor a little bit stronger against psychological abuse. When my daughters stepped into the classroom for the first time; they had a thousand real life skills under their belt.

There are many tools that you can use to evolve your skills. There are cookbooks, how-to books, and YouTube tutorials. You might even find mentors. For example, if you learn to drive a nail into a board, you might volunteer on building a house for Habitat for Humanity. While you pound nails, you might befriend another volunteer who will teach you the other skills of carpentry. This is a way of turning one small life skill into a marketable occupation.

When an Aspie learns a new task, it is like performing an experiment – he must complete the experiment and measure its success. He is measured on how well he accomplishes a task – has he met the standard to claim proficiency in the life skill task. If he does, he makes himself more useful to the outside world. But accomplishing the task also provides self-worth, expands his box, and his circle of influence.

Failure is also part of the process of learning. If you fail a task, try again and again, learn by changing variables, and learn how to accept guidance and constructive criticism, or use out-of- the-box thinking. Only don’t give up.

If you drive a 3-inch nail into a board and it bends over, that is a failure. But then one needs to learn from their mistakes. The nail needs to be removed in order to try again. If I remove the nail without damaging the board, that is a success. If you have to hit the 3-inch nail twenty times in order to drive the nail into the board that is not really a success. A good carpenter can do it in 2 or 3 strikes. But a good carpenter has years and years of experience behind them. If you can do this task in 4 or 5 strikes, then that is an acceptable win. If you hit your thumb with the hammer then that is a failure. But if you realize they make high impact gloves that will provide protection for your hand and you buy and learn how to use the gloves then that is a success.

Each of these tasks should be done with precision and perfection. The completed task needs to meet acceptable standards with a vision for excellence. Once the task is completed successfully, it does not need to be repeated but rather pick another different task. As you grow, increased the level of difficulty of the tasks. For example I taught my daughters at a young age how to bargain shop and determine the cost of a discounted item. This suit of armor was constructed by their exceptional capability to function in the real world. They knew more things, important life skills, than any of the kids in their peer group beginning on the first day they entered school. If anyone ever called them dumb or stupid or worthless; they absolutely knew otherwise.

One of the greatest lessons I learned early in life was “that I could do anything, accomplish anything, so long as I put my mind to it”.

Once you have enough wins behind you, you will have built up a proven track record of successes; then you will be able to step out into the unknown and experience the world as a non- conformist. And you will have a coat of invisible armor to protect you.

Are young children good at keeping secrets? (In my limited experience the answer is "No", but I'm not a parent so my experience is very limited.)

The reason I ask is...if your young daughter learns of her diagnosis, is she likely to share it before she is old enough to make such a decision for her future-self?

Hello and welcome to Wrong Planet.

There are no right and wrong answers here, in my opinion. Every family should do what feels right given their level of comfort with their extended circle of relatives.

My daughter and I are both on the spectrum. She wasn't identified until age 20. She used the diagnosis to obtain academic accommodations in University, but otherwise I've left it to her discretion. As an adult she's free to tell whomever she wants, which generally includes her friends and online contacts / autism forum groups. She chose not to announce it to the family although they do know of her unique set of needs. Neither of us are ashamed of our Autism but she prefers to disclose on a "need to know" basis -- with close friends, or online acquaintances who are more anonymous overall.

Your daughter is still quite young. As she matures and learns to understand the spectrum, I'm sure she'll have an opinion.

I would keep the information to people who needs to know. But likewise, I would not give the impression, especially to your daughter, that not revealing her autism is because it is somehow negative and needs to be hidden.

Thanks folks. I would never want her to believe there is something wrong with her, or for her not to be proud of who she is. The only reason I don't want society to know is that they may make her feel there is something wrong with her and if they have a label they will use that to put her into a category. It's just human nature. I want to protect her and I don't think we need to tell her she has ASD until she is emotionally mature enough to process it. With the intervention we are doing I'm confident she'll have very few symptoms as she reaches school years. I just want her to go through life with a positive self image.

What type of intervention are you doing? I just wanted to point out that your daughter's autism will never "go away", which I'm sure you know. Sometimes when we teach children to act more like their neurotypical peers, it means they will be suppressing a lot of their intrinsic personality, including sensory and emotional needs. You may want to help her explore and honour her autistic qualities as well.

I'm sure you know this, and I know you want your daughter to be happy and well-adjusted.

Hugs to your little one!

As you said it should eventually be her decision to make.

Regarding one specific Aspie: Me.

I did not know I was an Aspie when I was young--no one knew. Asperger's Syndrome wasn't in the DSM until the year I turned 40. And I was not diagnosed until shortly before I turned 65. However, as an oblivious Aspie, I did reasonably well for myself.

Did "being on the spectrum" affect my life? Yes! But I think it's probably a good thing that I went through life not knowing. I didn't have the label; I didn't know there was yet another thing for me to worry about.

And, comparing myself to many I know, being an Aspie may have helped me in many ways--even though I didn't know it.

So, I suggest you consider the approach my parents took. After I was diagnosed I found out from my father that, when I was little, my parents thought I did "weird" things but I wasn't being bad so they decided not to punish me. (I think a more positive spin on that would be: Acceptance.)

Sure, teach manners and values. Help them develop coping mechanisms for their weaknesses but also to use their strengths. Don't let Asperger's define a child, it is just a spice that makes them more interesting.

P.S. I was taught it was polite to look at people when I was talking to them. No one told me I had to look them in the eye. I muddled through life without it being much of an issue.

We are doing a lot of play based speech and OT.
The way I look at it is that we are like high powered macbook pros living in a world of PCs. Doing the therapy is like installing boot camp on the mac so it can operate in the windows world when needed But being a Mac is awesome and something to be proud of!

I was only 8 when I was diagnosed, which is too young for a high-functioning female Aspie with average intelligence and desire to fit in with peers and went to mainstream school. I was told about it straight away, and I couldn't handle it at all.
I thought I was a freak and I hated myself. I can't blame my parents though. It was the school for being so insistent and forceful to my parents to get me diagnosed and aware. My mum probably asked if I should be told straight away, but they probably said, "it's best for the child if she knows." They were wrong. I wish I hadn't known until I was a teenager at least. I wish I was just told that I just needed a bit of extra support in school because I might think differently to others, and that was it.
And the school never kept it confidential either. The whole class soon knew about it, and then I was started to be treated differently by the other girls. I think personally me and the rest of the class would have been better off not knowing. I was doing fine socially before I got this stupid diagnosis. OK I was shy but at least I wasn't thought of as "the kid with something wrong with her". Children and mental diagnoses don't mix. They're going to see any mental diagnosis as "contagious", "diseased", "revolting", "freak", and anything else you can think of.

So now as an adult I have totally brushed my diagnosis under the rug (apart from coming here) and am happily getting on with married life and employment. It's lovely, I finally feel normal again.


@OP - I know it is a hard decision to make whether to tell your child or not. I don't have much advice to offer I'm afraid.

This information will be used against her. There is very little benefit in disclosing, if any. Nobody cares what she has, because people are not empathetic like that. They will judge her on how she presents herself, and knowing the diagnosis can only make them meaner toward her.

I would have preferred to be told and know why people treat me so differently from a young age but at the same time be given the tools to work with it and confidence that being autistic is really cool.
Later in life it becomes extra stress to find out and especially when they're trying to date. They should have support from their autistic peers in school where it gets hard.

I would have preferred to be told and know why people treat me so differently from a young age but at the same time be given the tools to work with it and confidence that being autistic is really cool.
Later in life it becomes extra stress to find out and especially when they're trying to date. They should have support from their autistic peers in school where it gets hard and can feel alone in the world. Some people to share hardships with