Do I tell my child ?

Post Reply New Topic

Hello. I was just hoping I could get some advice or other peoples experiences. My husband and I have been debating what to do about this for a little while

My daughter was diagnosed with autism at 2. She is now 11. She went through several years of intensive therapy which made a world of difference.

She started PreK at 3 and for kindergarten went into regular classes with just a little help needed (504 plan). By the time she started 3rd grade the teachers thought she no longer needed any assistance and her doctor agreed. So we took away the 504 plan with the agreement if we saw any problems we would put it back in place.

She not only did not need the assistance she excelled in almost everything academic. She’s now in 5th and is all As and they are even talking about putting her in accelerated classes next year (charter school so transition from elementary to middle is within the same school)

Now all this is academic. socially.. She is friendly and sweet and doesn’t seem to have too many problems... despite being a bit awkward at times... but I was as well (and kind of still am). No one seems to think much of it.

There are other issues that are not very obvious but I know are most likely spectrum related. But no one just knowing her out and about would ever see her as anything except possibly a bit “quirky”. OCD like behaviors but not extreme.

I’m extremely grateful she is doing as well as she is. I like it that she seems to fit in well and loves school. We never hid her diagnosis but since it hasn’t really played into her life much lately we haven’t discussed it. She knows she needed help when she was younger but the word autism hasn’t been discussed since she’s been old enough to understand it.

So my husband and I have been discussing when to discuss her diagnosis. My husband doesn’t think we even need to mention it anytime soon. I however realize she will start getting more self conscious in the next few years and I think it may be good for her to know. To have it open and to where she can discuss it if she needs. And tell me if she thinks she needs help in any way.

Then last night my husband and I were watching tv. She walked in and watched for a minute and someone mentioned someone having autism on the tv. She then immediately asked “What is autism?” My husband and I looked at each other for just a few seconds trying to decide exactly what to say. However instead of waiting for an answer she then said “Alexa, what is autism?” Something she regularly does when she doesn’t know a word. It gave her the textbook definition. She said ok. And walked out of the room back to her homework.

I don’t want her to make her feel different but I want her to be able to understand herself.

Does anyone have any opinions/advice on how we should proceed ?

Thanks

I didn't find out I was autistic/on the spectrum/whatever you'd prefer to call it. Until I was 31. [I was tested in grade school, and it was decided my problems were simply behavioral back then] I was conflicted at first, and I am still dealing with the news. Suddenly a lot of things made sense, and there was a reason why I felt the way I did, acted the way I did.

I can't speak for your daughter, because, like they say if you've met one person with autism...You've met one person with autism but your daughter might be having more questions about herself and suppressing more than you realize. Girls tend to be better at "masking" autistic behaviors than boys, but it can take its toll on them psychologically/emotionally over time.

I'm only just learning myself but it was something referred to as autistic burnout that mad me seek a psychiatric examination. https://boren.blog/2017/01/26/autistic- ... d-passing/

again, I don't know your daughter, and she may actually be fine, but I think...if it were me I'd want to know, and from someone who cared about me. I still feel betrayed that I could have gotten help earlier if I knew. Not just the Autism symptoms, but the depression and anxiety that didn't really hit me until young-adulthood.

What an extremely tough call. I will be in a similar situation myself in a couple of years, perhaps I will come back to this thread and evaluate my options the same way you are now.

I can totally understand why you wouldn't want to wake a sleeping bear now that she's doing so well academically and socially. You'd expect her to be more unsure of herself and overthink situations just because of what you might place in her mind. A kind of 'don't fix what ain't broken' dilemma.

Then there is this thought of betrayal, that you're keeping something from her that she deserves to know about and that the longer you wait the harder it will be to tell her. I think parents with adopted children can relate to this issue in a way and in many cases they start early and make a sensitive word a part of their life.

That thing you wrote about her asking what autism is feels like a game changer to me. She's on to something and I have the feeling she'll find out more about autism herself. I'd say you should tell her now before she gets any older really. I understand you want to break it in the softest and most undramatic way possible. I think we all have that dream scenario where your son/daughter gets comfort in knowing everyone loves them just the way they are and that they're safe. If you decide to tell her, please let us know how you did it and what happened.

Aspies are often direct, speak their mind and are honest. So whatever you tell her be honest about it. Otherwise you may lose her trust. Be direct. Many Aspies [high functioning autistics] deal with a lot of bullying. For female Aspies this normally peaks during the high school years. So make sure she understands that you have her back. If any problems arise, you should be the first to know. That doesn't mean that you need to solve them but be aware that they are occuring.

While your daughter is excelling academically (from one fellow parent to another, congratulations), you may think she's also excelling socially but you have no way of knowing how well, how poorly or how much she may or may not be struggling with that.

You can assume it's at least a possibility (and given the social challenges characteristic of autism, a probability) that your daughter has struggled to "fit in" with her peers. Even if she's done well socially, she'll soon enter the teenage years and may end up having an extremely hard time socially.

I never communicated the challenges I had with peers at school to my parents. I also simply could not figure out why I was different from my peers.

This seems like a genuine dilemma, however DanielW gives a qualified perspective and brings up a very important point in my opinion. DanielW says he harbors/harbored resentment toward his parents for withholding such a fundamental part of who he was (ie neurodiverse).

I can't give a qualified perspective like DanielW since I was not diagnosed as a child, I can only project how I would have felt finding such a thing out only as an adult and finding out that my parents withheld that information from me. I can imagine that I would be extremely resentful of my parents. Withholding a key piece of information about why I am who I am when I'm at an age of social confusion and could find such information extremely useful? In some ways I could see that as emotionally devastating.

I can't advise you on whether or when you should tell your daughter. That's up to each family. Hiding a secret of course is unhealthy. But it is also true that our society doesn't understand autism, so autism carries a stigma.

But I would like to tell you a few things that might help.

I have two children on the spectrum, now ages 9 and 11. I chose to tell them about autism when they reached their eighth birthday. I wrote a letter to each of them. Here is the letter I wrote for my son. I read the letter to him on a train, on his birthday, so he could remember it was a special moment. Every year, on their birthdays, I would read the letters to them again. (Parts masked out, not because there was anything too personal, but because I want the original letter to stay as a family letter to him. After all, I do allow my children to read Wrong Planet. My daughter often sits next to me when I type messages in the forum.)

http://www.eikonabridge.com/Ivan_8th_birthday.pdf

The point is, we've never considered autism as something bad. Matter of fact, last year when my son was playing with LEGO and some electronic circuits, he asked my wife: "Mom, could you try to be more autistic?" My wife was puzzled and ask him: "What do you mean by being more autistic?" He then replied: "I mean being more smart, like Dad." Ha ha. Notice he did not ask my wife to be autistic, he knew my wife was neurotypical. He only asked my wife to *try* to be more autistic.

Both of my children are happy and creative. Frankly, I am like a hero in my children's eyes. My daughter had an "Inspiration" projection in school where they had to choose a person, write a short sentence, and bring a picture to classroom. My daughter chose me. So, my picture has been on the wall of the classroom this entire school year, next to people like Albert Einstein, Neil Armstrong, Martin Luther King, Steve Jobs, Pope John Paul II, Stephen Curry, Bill Gates, Elon Musk, etc. Ha ha. Later this semester, the students will do some volunteering work. For that, they will prepare a flyer, document what they do, and then give a presentation at the end of the semester. My daughter will go out and draw pictures for little autistic children and help them to learn to read. The point is: we are proud to be autistic, and we are the ones changing people's perception about autism. School teachers collaborate with me. My son's school teachers go crazy about him.

All that being said, you do need to prepare you daughter for what's coming. Anxiety strikes these children during their teenage years. Their brains are just too powerful, so they worry about too many things. This is especially true in girls. You should consider getting a smartwatch for your daughter at some point. She needs the smartwatch as a voice recorder. Anxiety can be eliminated (for each issue) by connecting her bad moments to her good moments, but for that, she'll need a voice recorder, or a smartwatch with voice recording feature.

http://www.eikonabridge.com/anxiety.pdf

High school years are tough on these children. Being bullied is unavoidable. But I take it as part of life. What doesn't break you, builds your character. High school years go by fast. After college, it's all blue sky again, because you'll be hanging around "filtered" people that share your interests. If she does get into PhD program one day, she'll realize that she'll be surrounded by people just like her.

Does anyone have any opinions/advice on how we should proceed ?

A lighter touch may be the key. If you dump the label of "disabled" on her it could contribute to some of your worst fears.

Alternatively you might (as the occasion arises) make reference to neurological diversity. You might say that her particular neurology is somewhat different from most others and probably contributes to her academic achievements.

Subsequently, you could occasionally reference the special treatment she got when she was younger and say it may have been related to her particular neurological configuration.

Only later you might speculate that some people call such neurological diversity "Autism". However, since they describe it as a spectrum, it is really an amorphous term that can be quite misleading as what one person means by using it can result in something very different to the person hearing it.

If one uses a light touch, it may be possible to explain in a way that avoids a child seeing themselves as "defective"

I don't refer to myself as Autistic because it has the negative connotation of being disabled. I am definitely not disabled or defective. I just have developed a different brain. I see the world very differently. I use the term Aspie and consider that an enduring term. I have grown into a Nonconformist. Your child too may become one someday. Here are a few sayings about Nonconformist:


Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They're not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can't do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do. – Rob Siltanen: Apple, "Think Different" campaign

It gives me great pleasure indeed to see the stubbornness of an incorrigible nonconformist warmly acclaimed. - Albert Einstein

Whenever you find yourself on the side of the majority, it is time to pause and reflect. - Mark Twain

Our wretched species is so made that those who walk on the well-trodden path always throw stones at those who are showing a new road. - Voltaire

Not all those who wander are lost. - J.R.R. Tolkien

You have enemies? Good. That means you've stood up for something, sometime in your life. - Winston Churchill

Do not follow where the path may lead. Go, instead, where there is no path and leave a trail. - Ralph Waldo Emerson

A "normal" person is the sort of person that might be designed by a committee. You know, "Each person puts in a pretty color and it comes out gray." - Alan Sherman

The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche

The average man is a conformist, accepting miseries and disasters with the stoicism of a cow standing in the rain. - Colin Wilson

“Freedom began on the day the first sheep wandered away from the herd.” ― Marty Rubin

When the parents decide to tell their children, then they can simply tell the truth. The problem is, most people don't know what's true and what's not. It's because they don't know, that they have chosen to hide. Here are some of the true points.

(1) Frankly, people out there don't understand autism. So, parents simply need to tell their children that autism is something that people still don't fully understand: not even doctors, neurologists or psychologists. Tell the children that they can Google and search for information on-line, talk to specialists, etc., but that the children should keep an open-mind, as the rest of the world could be completely wrong. Tell them that once upon a time, people also believed the earth was flat, and that the Sun goes around the Earth. Tell the children to find out more about autism. Tell them there are three schools of thought on autism: (a) the medical view: autism is a mental disorder, (b) the disability view: autism is not a mental illness, but autism can be a disability, (c) the lifestyle neurovariant view: autism is just a different life style, a different type of personality.

(2) Tell the children that the parents frankly don't know what to believe and who to believe, and don't even know what the right thing to do is. Tell the children that the parents have always tried to do what's best for the children, but that the children have to forgive the parents because the parents have been just as lost as the rest of the world, when it comes to autism. Tell the children that the parents have done the best, in their opinion, with all the information that has been available to them. Tell the children that the parents believe that today is the right moment to tell the children. Then tell them everything that happened when the children were young, and what interventions the children have had.

(3) Tell the children about some characteristics of autism, like additional synaptic connections, and larger brain size in some autistic people. Tell them that because of that, sensory signals tend to be amplified, and autistic people tend to dwell on some given thoughts. Tell them that that also explains why so many scientists show autistic traits. Tell them about genetics, and that autism has a strong genetic component, and search for family history and relatives to find out who else might be on the spectrum. Tell them that autism also has epi-genetic components so it can skip generations or be masked out. Tell them about anxiety, that anxiety happens because the brain is fixated on some given thoughts. Tell them about how to balance out their happy moments and sad/mad moments, and get rid of anxiety by using a smartwatch or voice recorder. Tell them sometimes life is tough, sometimes life is fun, and that's just the way life is.

(4) Take the children out on a one-on-one basis, have fun together. Do that on a regular basis. Mother-daughter, mother-son, father-daughter, father-son times are all important. Do it on a one-on-one basis. Spend time together, have fun.

I will always believe that children should know, using language they can relate to, but your specific situation is a little complicated. You haven't hidden it from her, but you've also had no reason to label it. Still, she is smart enough to likely have noticed differences, and she will have been filling in the blanks herself - usually incorrectly.

I would suggest a conversation that starts with questions. Ask if she ever feels different, if she feels puzzled at times by the way other people think or approach problems, and so on. Ask her what she thinks these differences mean. Do a lot of careful listening. Then gently start to prod her into her thinking a little further and differently on these differences, using that to eventually broach the topic of how her brain difference actually has a name: autism.

Be VERY careful, however, because she probably has also already formed ideas on what "autism" is, and may not yet understand the spectrum nature of it. Find out what she thought after learning the definition, and whether or not she has done any further reading.

Be sure to spin the positives of ASD: how many inventors are believed to have been ASD, the ability to see what others do not, etc. My son is proud to have an ASD mind.

I also have concerns about dropping the 504; the differences with ASD often become more apparent as children grow up, and it can take time to get supports back in place once released. Schools have a vested interest in "graduating" children from supports, but it isn't always the best idea for the child. My son "graduated" from his IEP after his second year in high school, but I held onto a 504 until he graduated. Having accommodations in place in high school was also essential to getting him accommodations for SATs and in college. The only thing he uses is the typing accommodation (he is disgraphic), so maybe it won't be necessary for your daughter, just ... heck, every advantage any child can get helps in our competitive world, although my son rejects anything he doesn't desperately need for exactly the same reason: he doesn't want to grab edges others cannot.

Anyway. Good to hear your daughter is doing well. Good luck with the conversation.

You may find that puberty will toss up new challenges (it very likely will), and I personally think it's something that's good to know before puberty. She's old enough to have an opinion, so I'd bring it up and allow her to decide what she wants to do with that information.

This story reminds me of an incident with my youngest daughter when she was around 4 or 5 years old. My daughter was a little strange because she normally didn't watch television programming but she was very fascinated with commercials. She just loved to watch commercials. One week way back then was a brutal week, every night the news reported the death of a child. Many times it was at the hands of their parents. I think she overheard these news stories. At the end of that week, my young daughter came to us and said "Mommy, Daddy, I have something I want to tell you. It is very important." So we stopped what we were doing. She said "I want to tell you that I love you."

Hi MoonUnit, I think the fact that your daughter asked the question is a good sign that now is the perfect time to discuss her diagnosis. I agree with what others have said on here that it's better she learns about it from her parents than from kids at school or someone else.

I was diagnosed at 8 years old and was told straight away. I hated it. I didn't want the label "Asperger's syndrome" to be attached to me. It kind of took my childhood innocence away, because all I heard adults say was that word, while other children just got on with their childhood not having to think about such a fancy label following them around. I hated hearing the word, and I got angry whenever my mum mentioned it. And a friend of mine had a brother with severe autism, and my mum got friendly with her mum, so she obviously told her mum about my diagnosis. So my friend then told all the other girls in the class about it, and they seemed afraid of me after that, like I had AIDS or something. It really did make me feel singled out and dehumanized. Having that label made me feel like I had a serious 'disease' that made me 'wrong'. Sometimes I wish I hadn't been told about it until I was older and more mature. Mind you, it's been 20 years since knowing about my diagnosis and I still haven't come to accept it.

So that's my experience of being told about my diagnosis whilst still a child.

Your experience is so opposite of ours that I am curious to figure out what makes the difference; if there is a way a parent could predict how their child might react so that they can time more wisely.

With my son the label was the least important part of our conversation. We started talking about the testing and why we undertook it, and all the ways he already knew he was different, a fact he already understood to have pros and cons. I expressed that all the testing had shown his brain worked a little differently, and then that there was a name for that difference.

Over the years we've talked more about how his unique brain works than the official label. The official label is what allowed me to access services and information, but talking about how his brain works is what got us through each day.

He prefers not to share the label with very many people. He always knew who I had disclosed to and who I had not. Among his friends, it was up to him. He is proud of being ASD and credits it for the out-of-the-box thinking he's always had. It helps, I think, that he's gotten a lot of positive feedback from the world for his uniqueness. People seem to like him. Not everyone - we did have bouts of bullying - but enough to give him affirmation in his creativity.

The problem is autistic spectrum conditions have been framed in a negative light. Yet every single time I've heard a news report of some kid gone missing for days in the bush and being found alive and well, that kid always had autism.

If it was my child, I would just sit them down and say, "Some people are better with society. Other people are better with nature and objects. Both types are needed in the world." And then I would tell them about my grandfather who was autistic all his life but was the bravest sailor and survivor of two world wars I've ever known and saved countless lives at sea and probably other places as well. I would tell them that you can't judge a person by what fashionable society thinks about them.

The focus the autistic brain can command stands one in good stead when confronting danger. I'm surprised this has never been emphasised given the evidence of so many autistic survivors as in the situations I've described above. The neurotypical brain can multi-task alright, but that becomes its biggest flaw in a life-or-death situation when all the implications and possible outcomes of that situation impress themselves on that person's mind at once, preventing action. The autistic person, free of all this head chatter, simply focuses on the problem and acts.

This is what I would tell my child if I had one and if they were anywhere on the spectrum. I'd teach them that they were heroes, and heroes must always walk a lonely road, but that one day their special talents would be discovered and appreciated in a wonderful way.

Blessings to you and your family.