Advice on telling kids about their autism

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Mona Pereth
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01 Aug 2021, 8:29 pm

I just now ran into this thread on Twitter, in which one person responds to the following question by a parent:

Quote:
When do you think we should tell them? I want to tell my son when the time is right (he's 7) but not sure how much he'd understand yet and don't want to cause him anxiety by telling him he's 'different' when as far as I can tell he doesn't seem to be aware of any

One person says:

Quote:
This is the biggest confusion to me as an autistic person who was late-diagnosed -

The part where the parent is worried that telling them about their difference would cause their kid anxiety.

My entire childhood was anxiety because I didn't know I was autistic. Because I thought something was "wrong" with me, because there seemed to be something missing, things were harder and I was told they shouldn't be.

This person also says:

Quote:
To non-autistic parents out there -
You will not know when your autistic child feels different, especially if you never tell them that they're autistic. That is a complicated internal experience that an autistic 5-year-old, even a 13-year-old cannot easily articulate.

and:

Quote:
Autistic people need to know that there are other people like us and need to find community. We need to know why a lot of kids at school won't be friends with us. Why people bully us. Because if we don't know, we're going to think it's -our fault.-

and:

Quote:
So I know you, as a parent, are feeling anxious yourself about telling your kid. You're worried about screwing things up, saying the wrong thing.

And I just want to tell you that saying nothing is far worse than telling them anything.

Far, far worse.

Please tell them.

Another person says:

Quote:
And don‘t just tell your child they‘re autistic.

Explain to them what that means, age appropriately - and ongoing, because as they age, grow, develop, other things, new things will become relevant.

And get them contact to other autistic kids right away.

Make it a priority.

Another person says:

Quote:
I wish parents could see how dehumanizing it is to deny a kid access to basic self-knowledge. The adults around them get to know and let that impact how they react to the kid. It's so disempowering and self-doubt-creating for the kid to be left out of the convo abt their own life.

I agree with all of the above.


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DW_a_mom
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02 Aug 2021, 2:18 am

Agreed. It is very rare to come across a child who wishes their parent hadn't told them, but extremely common to find children damaged by their parents not having told them. It will always be case by case, but it is naive for any parent to think their child isn't aware they are different, and isn't busy reaching their own (often damaging) conclusions about what makes them different. It is all so easily solved with a simple "your brain works different" explanation. There is no good or bad in that explanation, and my son was immensely relieved to receive it at age 7.


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timf
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02 Aug 2021, 5:42 am

I am not sure a label would be that helpful. Rather a parent can identify any quality their child has for instructional or even corrective purposes. For example, a child that has explosive anger issues will have to learn more how to control them regardless of if they are melt-downs or not.

A child that has an exceptional focus may have to learn how to improve peripheral attention regardless of if they have Aspergers or not.

Children benefit most from parents that can identify their strengths and help them learn how to employ them as well as their weaknesses and learn how to manage them.



QuietThoughts
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02 Aug 2021, 6:31 am

Being told that I was "different" as a child (< 10) didn't really settle in on its own. I had to figure it out for myself, and that often transpired from an endless amount of disappointment.



SocOfAutism
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02 Aug 2021, 8:34 am

I don't think parents should tell their kids they "are" anything. You can say that their doctors have diagnosed them with this that or the other, but really it is up to them to decide when they are older. That is what I have told my son. He is 7, and honestly, many doctors have diagnosed him with many things, some of which are clearly just to justify treatment they want to try.

I think this is especially true with autism. I really do not think you can observationally diagnose autism. You can say the person "probably" is autistic and treat them accordingly, but you should always keep in mind that it may still be social anxiety or hyper sensitivity or something else. Each person has to mature enough as a person to see what fits.



DuckHairback
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14 Aug 2021, 6:29 am

My daughter is 7. She's undiagnosed but we're working towards it. She's just becoming aware, I think, that she struggles with things that other girls her age don't struggle with (mainly sensitivity to clothes and anxiety over leaving the house). I find it really hard to watch her and she's recently made comments about hating the way she is and even that she wishes she was dead (which I don't think she understands but is pretty awful to hear as a parent regardless). My instinct is to tell her as soon as we have a diagnosis so she can start to understand herself by that definition instead of comparing herself to other children.



SocOfAutism
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19 Aug 2021, 9:30 am

Duck- my son sometimes says really negative things about himself like that as well. He judges himself as being so different from other kids and then he always focuses on where he comes up short.

It seems to help him if other kids notice something special about him and call attention to that. Like how his little dude friend loves to wrestle him or his school friends ask him for reading help.

Maybe you could set up a playdate with one of your daughters friends where she can help them with something she is good at?



DuckHairback
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19 Aug 2021, 1:34 pm

SocOfAutism wrote:
Duck- my son sometimes says really negative things about himself like that as well. He judges himself as being so different from other kids and then he always focuses on where he comes up short.

It seems to help him if other kids notice something special about him and call attention to that. Like how his little dude friend loves to wrestle him or his school friends ask him for reading help.

Maybe you could set up a playdate with one of your daughters friends where she can help them with something she is good at?


Thankyou, that's seriously good advice. I'm going to try it.



cyberdad
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03 Sep 2021, 10:22 pm

So for my daughter her primary school told her (this was part of the agreement/MOU to let her attend mainstream school) so that other pupils/teachers were aware.

My daughter's response is that she doesn't define herself by the term and never uses it to describe herself to us or her friends at school.

The volumes of books we purchased on autism have been of little value. As parents we never label her anything and respond to any innapropriate behaviour on a case by case basis.



ScottieKarate
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29 Sep 2021, 1:46 am

Ha. I had "the talk" with my 8-year old this week. I told him everyone has a different kind of brain, there are some things he's good at and some things he struggles with. Some things he learns differently than others, so we have therapies and aides at school and whatnot. I told him some friends that also have brains like his. He knows. There's no way by this point he doesn't know. I also don't think he cares. He's just him and he's just gonna do his thing. I only told him because he can be very hard on himself. And I just wanted to let him know that it isn't his fault.



Ettina
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07 Oct 2021, 8:04 am

I didn't really think of myself as different from others until I was 10. Before then, I just assumed that everyone was unique.

With my kid, since I'm autistic, I'm planning to be open about my own diagnosis all along. If they turn out to be on the spectrum as well, they'll know as soon as I do.



Joe90
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14 Oct 2021, 4:00 pm

I'll advise parents not to rush to get your kid diagnosed so hastily. Having a diagnosis doesn't always necessarily make a kid accept themselves. I got diagnosed when I was 8, even though I'm a high-functioning female Aspie, and having a diagnosis has had more of a negative affect on my mental health than the disorder itself, I think.

The way I deal with it is to keep it closeted and go about my social life like I have never even heard of it, and it does make me feel more normal. But it's difficult to keep it a secret when everyone who I knew from childhood were told about it (family, friends, school, neighbours), because there is a risk of someone letting it slip without knowing how much I hate my diagnosis, in front of people who don't know I have it. Things can get very awkward.

I have always been embarrassed about it. I was like an NT child in lots of ways, and kids knowing I had a label really was an obstacle for me. You know kids and labels - if you tell an NT kid your kid has Asperger's syndrome, you may think it will make your kid be accepted and understood, but it doesn't. The NT kid will usually see Asperger's as some sort of contagious disease and it could ruin your child's social life.

So if you do have to get your kid diagnosed, ask your child how he or she feels about it. If he or she shows signs of embarrassment or any other sort of resentment against it, it is probably best you don't make the same mistake my parents did and tell every person in their lives about it. Just go as far as "my child just needs some extra support", and only keep the diagnosis between doctors and teachers, and maybe one or two close relatives. Don't go telling everyone - unless your child lacks that sort of awareness or is happy with the diagnosis. Get the child involved. Us adults believe that children shouldn't get a say in anything, but I think it would have done my mental health a lot of good if I was asked more how I felt, and if I was happy with having a diagnosis, and if I wanted to keep it confidential. I knew from the age of 8 how resentful I was about having a diagnosis, and I expressed it enough, but it was too late. My parents had told everyone and their dog on the day I received my diagnosis that I had Asperger's before I was even told about it. When I was told about it, I swore at my mum because I was so angry (I was only 8 years old). She told me I had Asperger's syndrome, and I replied, "what the f**k is that?" Then when she yelled at me for swearing I said "don't yell at me, I have f*****g Asperger's syndrome!" I was not the sort of child to swear or to answer back at my mother. So you can see what a bad affect getting a diagnosis had on my mental health. I was quite contented within myself before I got the diagnosis.


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IsabellaLinton
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14 Oct 2021, 4:48 pm

My daughter told me I was autistic, so it worked in reverse. 8)

In turn I haven't told my own mother.

My daughter is also ASD but she was diagnosed as a young adult. I think I would have told her when she was little, if I had known. I don't believe in keeping secrets from people (except my mother lol).

I think if you explain it to your child it's important to have some type of counsellor or age-appropriate therapist ready in the wings, if your child needs support. I wouldn't want them to feel hurt and confused the way Joe describes.

:(

Hugs Joe.



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14 Oct 2021, 4:52 pm

My parents told me I was assessed and that they think I'm autistic (more specifically that they thought I have Asperger's) at 11. At first I was irritated because I didn't really fully get what autism/Asperger's was, but after I looked into it more it made sense, and I think it was very beneficial to know that about myself. I used to be very hard on myself for not living up to adult and other children's expectations and for not "getting" other people, so when I found out it was normal for me to be like that and that I was probably just "wired differently" I became a lot more comfortable in my own skin, and started focusing on my strengths more than my weaknesses. I think if I was actually diagnosed and told that earlier at 6-7 it would have been even better.



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15 Oct 2021, 4:38 pm

I think I'm just a unique case here, which makes me feel quite alone. It is very hard to find other Aspies who were diagnosed early in life AND feel angry and embarrassed about their diagnosis. I feel like a person born as the wrong sex, if you know what I mean, except in my case I was born with the wrong brain. I feel I'm not meant to be Aspie. I don't feel comfortable in my own skin. And there aren't many other spectrumers who think this way.


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cyberdad
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15 Oct 2021, 7:35 pm

Kids have access to something called "google" these days and a quite capable of self-diagnosis.