How'd You Tell Your Child They have Asperger's?

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heineken
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07 Jan 2017, 8:45 pm

My son is a freshman in high school. He was diagnosed at age three and has been on an IEP since kindergarten. He's strong academically. He's a very sweet and sensitive boy. We've never formally sat him down and explained that he has Asperger's and outlined its social challenges.

Over the past few weeks, he's grown depressed. Part of the challenge is that he's trying to put his finger on "the one thing" that is the root cause; as if it's an interaction he had weeks ago that is buried in his subconscious (which, of course, it's not).

This makes me wonder whether we should formally sit him down and lay all of this out for him; at least to the best of our ability. I wonder if this information will, in some ironic way, 'free him.'

Trouble is, my wife and I don't know how to approach telling him. She's a special ed teacher and will be reaching out to colleagues for names of clinicians to speak with. That said, I'd be very interested to hear how others have approached this. On a related note, I'd be interested as to how others have communicated this to a child's siblings. My son has two younger brothers, a 5th and a 7th grader.

Thank you.



somanyspoons
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07 Jan 2017, 9:16 pm

Oh, goodness. I'm sorry to say this, but I hope this is a good example for everyone who has a three year old on the spectrum. This kind of conversation is best had early, frequently, and casually. Allowing the child to lead the way by asking questions. And make it as much of a no-big-deal as you can. It's just another fact about them. You have brown eyes, a interest in spiders, you hate hotdogs, and you have aspergers.

A ninth grader... If he's a good reader, I would give him a book or two on the subject. There's a book for teens, "Freeks, Geeks and Asperger's syndrome." He might be a little beyond it and he might not. Depends on the kid. Your son might also like taking that online test through asper_quiz, so he can see how his strengths and weaknesses compare to other people on the spectrum. He's becoming a young man. And he needs to start seeing himself as the metaphorical captain of his own ship. When he asks for his test results from when he was a kid, it's time to give those to him.

You shouldn't sit down and have one talk with him. You should have a series of small, low pressure opportunities for him to ask questions and request more information. I would mention his diagnosis to him, give him some materials, and tell him that you'd like to talk more later. Then follow up with another sit down session with him.

You should provide him with the kinds of tools that you needed to process the information when you first found out - books, articles, online communities (You might want to try to guide him to good sites for teens. Honestly, wrongplanet is a bit ruff for teens. There are a lot of lonely older guys who use this place as a chance to express distress at being alone. Lots of talk about prostitutes, drug use, and hating women. Kids don't really need to hear that kind of stuff.) He may need to talk with a professional so that he can ask questions about what aspergers means in his situation.

Come to think of it, you really know what it's going to be like for him, because you had to go through all of this ten years ago when he was first diagnosed. It's really very similar. (Huh. I hadn't seen it that way before.)

On the subject of your son becoming a man. He should be firmly in control of what his siblings are told, when and where. If he can, he should be the one to do it, but he might ask you to do it for him. That's fine. But the point is, he's in control. This is his medical information. And I really applaud you for giving him access to it.



beady
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07 Jan 2017, 9:27 pm

You son has no idea he was ever diagnosed with anything?



somanyspoons
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07 Jan 2017, 9:33 pm

When I was a child and newly diagnosed, my parents got the tell-them-early part. But they didn't get the part about being calm and casual about it. I have vivid memories of my mother crying over me. At the tender age of 8, my mother told me that she was afraid I would never go to college. (I have a masters degree, BTW. My undergrad is in Special Education and my masters is in chiropractic.)

But once they got over the dramatics, they did pretty well. I was fully aware of my diagnosis. I had age appropriate books on the subject, and as an excellent reader, access to my parents' books on the issue too. There was no internet. I did a report on learning differences in the 5th grade. I always knew that I was going to be in charge of dealing with my differences as I got older. That was a real advantage when I became an adult! I was never in shock that my parents weren't in control of my education anymore.



eikonabridge
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07 Jan 2017, 9:44 pm

heineken wrote:
We've never formally sat him down and explained that he has Asperger's and outlined its social challenges.

Oh boy. His reaction will be: "What else have you been hiding in all these years?" Anyway, check your private message box, I've forwarded to you the letter I wrote to my daughter, at her 8th birthday. This year she will be allowed to read WrongPlanet, even all the messages I have written here (and all the nasty responses from other people and all the eggs thrown at her daddy's face, ha ha). See, I don't hide things from my children. If my children are always happy, there is a reason.

Quote:
Over the past few weeks, he's grown depressed.

Anxiety and depression are not exclusive to autistic people. The majority of people suffering from these issues are neurotypical. Try this. Give him a digital voice recorder. When he is depressed, tell him to record a few words. OK to be cryptic. A few seconds are enough. Now, people always have fun at one point or another. Even just taking a walk in the park, looking at the clouds in the sky and watching little animals can count as happy moments. Going out for ice cream is also a happy moment. Going to birthday parties is also a happy moment. When he is happy, he then will pull out his voice recorder (find a discreet place to do that), and listen to his messages from the moment he was depressed. Then he will sort out his thoughts, and tell himself how to take things easy. Remind him that life always have ups and downs, that life sometimes is tough, some other times is fun. Then next time he is depressed, he will remind himself about the happy moments of his life and what he has told himself at those happy moments. Establish a space-time wormhole tunnel between the good moments and bad moments of his life. Think of the bad moments when he is happy (a voice recorder helps that a lot), think of the good moments when he is sad. That's all. No medication needed.


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heineken
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07 Jan 2017, 10:19 pm

beady wrote:
You son has no idea he was ever diagnosed with anything?

I'm sorry, but that's not terribly helpful.



heineken
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07 Jan 2017, 10:23 pm

All others, thank you for your comments and advice. If you're aware of useful, age-appropriate resources, online or otherwise, for a young teen, those would be most appreciated.



somanyspoons
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07 Jan 2017, 10:33 pm

heineken wrote:
beady wrote:
You son has no idea he was ever diagnosed with anything?

I'm sorry, but that's not terribly helpful.


I think this was a legit question. When I saw it, I wondered if I jumped the gun by answering before knowing this.

The truth is, your son might know already. Or he might have some distorted ideas, based on half conversations he's already heard.

You might start your conversation by asking him what he knows about why he got special help in school.



heineken
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07 Jan 2017, 10:36 pm

Good suggestion.



Tawaki
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09 Jan 2017, 2:42 pm

Question. In my school district, all teens with an IEP have to sit in on the meetings and have input on what they find useful or not so much.

I can't imagine those meetings not saying what the diagnosis is.

Socially is he low, like a 7 or 8 year old?



somanyspoons
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09 Jan 2017, 2:50 pm

Tawaki wrote:
Question. In my school district, all teens with an IEP have to sit in on the meetings and have input on what they find useful or not so much.



Yea!! !! I can't tell you how much I advocate for this. But it's rare. When I was a kid, I was never once included in IEP meetings. What a way to disenfranchise a kid from her own life.



MagicMeerkat
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11 Jan 2017, 2:58 pm

I think mine told me right after they were told. My parents were never really ones to keep secrets. Unfortunately, the words they used made me feel like I was supposed to feel "defective" in someway. I didn't feel defective. But I felt like other people found me defective.


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cyberdad
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11 Jan 2017, 4:35 pm

My 11 yr old was rummaging through a pile of documents and found a photocopy of her clinical assessment records which stated she had Autism. She was fairly "a matter of fact" one day when she casually told me.



TheNameless
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14 Jan 2017, 8:55 pm

With my son I have always been open and honest with him about what his appointments and assessments were related to. He's eleven years old now and was diagnosed at nine. I thought it was important that he know about his diagnosis so that he could better understand the difficulties that he's had his entire life. He has always struggled with low self esteem but I think this helped him to accept himself better as he knows why he is a bit different.



Tawaki
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16 Jan 2017, 11:03 am

I mulled this over a bit before I answered.

Before you do anything, I would suggest you figure out why you haven't told him until now. It will be a really hard sell "autism isn't bad, it's just different", when you haven't said boo in 10 odd years. If it is just different, nothing to be ashamed off, why have has it been the elephant in the room?

You can tell a 3 year old he has autism. "You have autism and your brain just thinks differently." The child may ask questions or go back to playing. A statement of fact that is age appropriate. As the child get older you can expound on the statement.

You now have a depressed 15 year old. Teenagers HATE being different. Instead of having 12 odd years of gradually dealing with a issue, you withheld information.

Who knows how your son will accept the information. He may just look at you or blow sky high. Books are great, but I think you really need to do this in a neutral party's place. His therapist, doctor....whoever. You will need someone to diffuse the situation if things get out of hand.

Mainly because the first thing I would ask is why didn't you tell me earlier? Where you ashamed? If autism isn't a big deal, why drop this on me now? Didn't I have the right to know? Hoping I wasn't autistic?

Saying you didn't want to treat him different, protect him, keeping his life as normal as possible is great, but in the next paragraph saying, "Autism is different not bad" instantly negates everything you said above. If my condition isn't bad, why withhold information?

If he's anything like the Aspies I know, they know they are different. My husband was diagnosed at 50. That is a totally different deal. Your son has been getting help. He knows he is different. I have a hard time believing he knows absolutely nothing about his diagnosis, but I'll take your word for it.

It also opens Pandora's box of what else haven't you've been telling him. He may have a tough time trusting you.

I'm not busting your chops, but thinking you can plop down with a book and explain his diagnosis away is a naive.

Figure out why you haven't said anything until now and go from there. I think the issue will be more about withholding information than questions about the diagnosis.

Hoping the diagnosis will ease your son's mind.