Telling a child about an ASD diagnosis

[Slache]

DS9 was diagnosed at 6 but I didn't tell him and now I'm learning that I'm the worst parent in the world and have completely ruined him for life (Reddit). So that's nice.

Well, I've decided to tell him and I have absolutely no idea what to say. How do I do this? Also, we are 99% sure DD7 has it as well, but there has not been a diagnosis. So help. Please.

Please be gentle. I'm feeling very defeated right now.

[Not_a_Number]

As a caveat, I have no personal experience with this, but I do have thoughts. I hope they are helpful. 

So, personally I would 

a) Stay off Reddit and other places people can be judgmental jerks 

and 

b) Approach this from a direction of empathy. Is he aware of any differences between himself and other kids? Has he ever made observation about it? 

[Lawyer&Mom]

Ugh.  I feel this. I finally told DD7 after people on Twitter insisted I was withholding her diagnosis from her out of shame.  Um, no.  But it was probably time to tell her anyway, so...

The conversation went something like this:  “You know how we talk a lot about mommy’s brain working differently?  And you know how you and I both think your brain is like mine?  Well, it turns out there is a word for people with brains like mommy’s. It’s called being Autistic.”

”Oh, okay, so I’m Autistic then. Okay, cool.”

The point being that even though I had never told her the word Autism, we had observed and discussed how our brains work *a lot* before.  I wanted her to have an understanding before she had a label.  This was a nuance that Twitter did not understand, but I’m sure you will.

Take your time, lay the foundation, let it be meaningful to your kid.  

[Slache]

16 minutes ago, Not_a_Number said:

Is he aware of any differences between himself and other kids? Has he ever made observation about it? 

This has been happening recently, which is the issue.

2 minutes ago, Lawyer&Mom said:

The point being that even though I had never told her the word Autism, we had observed and discussed how our brains work *a lot* before.  I wanted her to have an understanding before she had a label.  This was a nuance that Twitter did not understand, but I’m sure you will.

Take your time, lay the foundation, let it be meaningful to your kid.  

Ok! This is good, thank you. He needs exercise and a natural diet and stuff. He sees that need. I can use that. Thank you.

[Lecka]

We have talked about it with my 11-year-old, but he doesn’t remember.  It is not a big deal to him at this point!  He doesn’t really notice ways he is different from other people.  Last year he didn’t notice that he left his bus early and went to his classroom, while all the other kids stayed on the bus and then went into the cafeteria.  He didn’t notice it and when we talked about it he didn’t think anything of it.  
 

This is something where — in that grade they said they saw more kids notice things like that and not want to do things noticeably different.  
 

So I think it just depends!

[Not_a_Number]

1 minute ago, Slache said:

This has been happening recently, which is the issue.

Then I think an explanation will be helpful 🙂 . Don't make it sound like a stigma. It's what his brain is like, and he needs to work with its strengths and weaknesses 🙂 .

[Lecka]

I think his current age is a good age.  I have heard when kids are noticing, it’s a good time, because they are interested and it’s on their mind.  

[Lecka]

Are there siblings?  Talking about things with siblings has been what is really pertinent here, and we have conversations about it over time.  
 

Edit:  things are certainly noticed by siblings, and sometimes things come up where “they” would not like something but my son doesn’t mind.  
 

That was kind-of the situation with the bus, siblings thought he would be embarrassed.  

Edited October 28, 2020 by Lecka

[Terabith]

Despite having our first autism assessment at age 2, my youngest didn't actually get her diagnosis until 11, and it was a casual, "Um, you know she's autistic, right?" thing.  So she knew what autism was.  We just told her, like in the car, yeah, Doctor So and so thinks you meet the criteria.  She was like, "Oh, yeah, that makes total sense."  

[Rosie_0801]

My attitude with my daughter has always been "Uh, brains are weird and there's only so much we can do to negotiate with them."

[Not_a_Number]

1 minute ago, Rosie_0801 said:

My attitude with my daughter has always been "Uh, brains are weird and there's only so much we can do to negotiate with them."

I always feel like approaching things from the "well, this is the brain you've got, let's work with it" perspective is best. I wish someone had taken that tack with me, lol. (I'm not specifically anything, but certainly I have marked strengths and weaknesses. It would have been helpful to talk about them with no judgment.) 

[SanDiegoMom]

I think any diagnosis is a good idea -- I know my kid with adhd was so relieved to find out that is what she had, and my kid with anxiety knows that he has a lot of family members that struggle with the same thoughts and that he's normal.  When you see everyone else doing something one way and you do it another way, knowing WHY you do it is huge, and takes away the feeling that you are somehow wrong. 

[Not_a_Number]

1 minute ago, SanDiegoMom said:

I think any diagnosis is a good idea -- I know my kid with adhd was so relieved to find out that is what she had, and my kid with anxiety knows that he has a lot of family members that struggle with the same thoughts and that he's normal.  When you see everyone else doing something one way and you do it another way, knowing WHY you do it is huge, and takes away the feeling that you are somehow wrong. 

I think that's right. I've seen the idea that by avoiding "labels" all we accomplish is that instead we have kids label themselves, and labeling themselves doesn't result in anything good... only in labels like "weird," "stupid," "awkward." 

Edited October 28, 2020 by Not_a_Number

[PeterPan]

1 hour ago, Slache said:

now I'm learning that I'm the worst parent in the world and have completely ruined him for life (Reddit)

This is the part I'm missing. What is reddit saying? Or your ds is saying you've ruined him? If he's saying it, it matters. I'm not sure why you'd care what reddit thinks. I also don't think you have to care what "autism experts" or "autism self advocates" or anyone else thinks. 

Fwiw, I also don't think you have to tell someone they "have" autism, as if autism is a disease or catching. Unless of course you don't mind if I walk up to you and say you "have" a neurotypical brain and no super powers like the ability to hyperfocus and make things happen. To me, NT are the disabled ones and they don't see it that way because they are in the statistical majority. To me it's just a Sneetches thing, something that really doesn't matter.

I also think, and this is just me, that you have the DSM criteria and then what the word *means* to people. I felt like the word wouldn't *mean* anything to my ds and that therefore there was no benefit in slapping it on him like some extra name (Alfred or George). 

I've just kind of kept the term out there, floating, not hidden but not really talked about a lot either. We talk about falling into the "aut" (of autism), beating our beasts (of isolation, anxiety, etc.). We talk about people who are brilliant and people who have a hard time. We talk about people who go to jail for behaviors and how they won't care what your label or excuse is when you have the behavior, that people who do xyz go to jail. 

So just with that sort of environmental usage, he put two and two together. A relative takes him on outings and says he will use the term of himself. But it's very organic at that point and means something to him. I like it in that sense because I think it's more real and durable than a definition or a term foisted on. And I think he gets there by seeing the *similarities* between himself and others in their struggles. Like if we go to the autism school or somewhere and he sees a person with behaviors, we talk about how he has those struggles too, maybe similarly, maybe differently. It's an umbrella label, not homogenous. 

Because it's not homogenous, it's also not homogenous what people prefer to be called. Some people *like* the term autistic and they'll say they "are" autistic. I don't use it that way. I think it's ok to you don't *identify* with the range of what is covered with the umbrella term autism and that you want a way of expressing how you function that makes sense to you. There are lots of things a person in this position *could* say that are ALL TRUE. And I think it's ok to fall into what you identify with.

I don't identify with some of the self-advocates who write articles saying that people who are "not out" as adults are not being "role models" and blah blah. I think part of dignity is deciding what you want to share with the world about yourself.

So terms matter, words matter. I think *self honesty* is important. But what particularly it's called matters less. I'm pretty much in the anything goes camp on that, as long as it's terms the person agrees with that get access to the support he needs, they're golden.

1 hour ago, Slache said:

I'm feeling very defeated right now.

Because he has a diagnosis or because your vitamin D is low or because something has been happening? The words don't matter, the article didn't matter, the experts don't matter. I highly doubt you're hiding EVERYTHING about disabilities from him. It happens, but I doubt you're doing that. I would be very careful not to be hard on yourself. Things are going to be hard enough with real problems, let alone expert guilt tripping problems. Make sure you're taking care of yourself. Write this in an envelope, put it away for 3 months, do good things for yourself, then come back and see if you still think it's a problem.

Edited October 28, 2020 by PeterPan

[Drama Llama]

I think you're a great mom, and I agree that you might want to lay off Reddit.  I also think it's time to talk to him.

In my experience, when a child is going to experience negative messages from the world about some aspect of themselves, it's better for the adults who love them, and who are their allies, to get out ahead of those negative messages, and get their messages in first.   It's why every African American parent I know talks to their kids about slavery, or racism, or police brutality before their kids learn about these things at school or in the community.  It's why we give our daughters messages about being strong confident women before they meet people who think that's an oxymoron.  It's why parents of children who are adopted are encouraged to talk about adoption from very early on.  

As a high school teacher, I've seen too many kids arrive in 9th grade having absorbed all sorts of negative messages about people with disabilities, and not knowing that they're included in that category.  When they start putting the two things together, the societal messages about disability and their own label, it can lead to a lot of confusion and emotional pain.  The kids who encountered those two things in the opposite order generally did better. 

I agree that talking about how his brain works, and then saying "there's a word for that" can be an excellent way to introduce the idea.

Good luck, you've got this!

[Slache]

31 minutes ago, PeterPan said:

This is the part I'm missing. What is reddit saying? Or your ds is saying you've ruined him? If he's saying it, it matters. I'm not sure why you'd care what reddit thinks. I also don't think you have to care what "autism experts" or "autism self advocates" or anyone else thinks. 

Fwiw, I also don't think you have to tell someone they "have" autism, as if autism is a disease or catching. Unless of course you don't mind if I walk up to you and say you "have" a neurotypical brain and no super powers like the ability to hyperfocus and make things happen. To me, NT are the disabled ones and they don't see it that way because they are in the statistical majority. To me it's just a Sneetches thing, something that really doesn't matter.

I also think, and this is just me, that you have the DSM criteria and then what the word *means* to people. I felt like the word wouldn't *mean* anything to my ds and that therefore there was no benefit in slapping it on him like some extra name (Alfred or George). 

I've just kind of kept the term out there, floating, not hidden but not really talked about a lot either. We talk about falling into the "aut" (of autism), beating our beasts (of isolation, anxiety, etc.). We talk about people who are brilliant and people who have a hard time. We talk about people who go to jail for behaviors and how they won't care what your label or excuse is when you have the behavior, that people who do xyz go to jail. 

So just with that sort of environmental usage, he put two and two together. A relative takes him on outings and says he will use the term of himself. But it's very organic at that point and means something to him. I like it in that sense because I think it's more real and durable than a definition or a term foisted on. And I think he gets there by seeing the *similarities* between himself and others in their struggles. Like if we go to the autism school or somewhere and he sees a person with behaviors, we talk about how he has those struggles too, maybe similarly, maybe differently. It's an umbrella label, not homogenous. 

Because it's not homogenous, it's also not homogenous what people prefer to be called. Some people *like* the term autistic and they'll say they "are" autistic. I don't use it that way. I think it's ok to you don't *identify* with the range of what is covered with the umbrella term autism and that you want a way of expressing how you function that makes sense to you. There are lots of things a person in this position *could* say that are ALL TRUE. And I think it's ok to fall into what you identify with.

I don't identify with some of the self-advocates who write articles saying that people who are "not out" as adults are not being "role models" and blah blah. I think part of dignity is deciding what you want to share with the world about yourself.

So terms matter, words matter. I think *self honesty* is important. But what particularly it's called matters less. I'm pretty much in the anything goes camp on that, as long as it's terms the person agrees with that get access to the support he needs, they're golden.

Because he has a diagnosis or because your vitamin D is low or because something has been happening? The words don't matter, the article didn't matter, the experts don't matter. I highly doubt you're hiding EVERYTHING about disabilities from him. It happens, but I doubt you're doing that. I would be very careful not to be hard on yourself. Things are going to be hard enough with real problems, let alone expert guilt tripping problems. Make sure you're taking care of yourself. Write this in an envelope, put it away for 3 months, do good things for yourself, then come back and see if you still think it's a problem.

Because a bunch of strangers on the internet told me I did irreparable damage to my kid.

You've given me a lot to think about. Thank you.

Feeling defeated because I've spent the last 18 months in bed, am in enough pain to cry daily, feel like I'm never going outside again. It's just been a bad day and I guess I didn't need this on top of it.

[Slache]

2 minutes ago, BaseballandHockey said:

I think you're a great mom, and I agree that you might want to lay off Reddit.  I also think it's time to talk to him.

I joined the group 2 years ago and I've never had this experience. I blame current events. Everyone is on edge.

[Not_a_Number]

Just now, Slache said:

I joined the group 2 years ago and I've never had this experience. I blame current events. Everyone is on edge.

I think it's partially current events, and partially because admitting weakness makes you vulnerable and brings out the vultures. It just does. 

[Drama Llama]

2 minutes ago, Slache said:

I joined the group 2 years ago and I've never had this experience. I blame current events. Everyone is on edge.

OK fair enough. It's a tough time. 

[Rosie_0801]

You and your kiddo might like Teresa Scovill's comics.

[PeterPan]

1 hour ago, BaseballandHockey said:

In my experience, when a child is going to experience negative messages from the world about some aspect of themselves, it's better for the adults who love them, and who are their allies, to get out ahead of those negative messages, and get their messages in first. 

This is such a good point. 

 

1 hour ago, Slache said:

Because a bunch of strangers on the internet told me I did irreparable damage to my kid.

Wow, if that's what Reddit is, maybe you need to permanently BLOCK that site from your computer for your own mental health? I mean, I get the lonliness thing, but how about something moderated or more healthy? I mean like why not a pro marijuana group or something that would actually be live and let live... (For the record, I do zero with anything weed.) But you know what I mean? Maybe a nice knitting group or something else? Some people are just TOXIC. 

1 hour ago, Slache said:

Feeling defeated because I've spent the last 18 months in bed, am in enough pain to cry daily, feel like I'm never going outside again. It's just been a bad day and I guess I didn't need this on top of it.

Were you also doing the DDPY thing? How is that going? And since I missed it, how did you end up in bed so much? Is this going to change? 

I'm sorry you're having a hard time. I think when you have a hard time with things, you need to be extra cautious about your mental health. I had some health problems for a while, and at that time I only read *Psalms* for Bible reading. My brain just needed to stay in positivity mode. 

Can you get someone to minister to you in a tradition you believe in or with something uplifting or at least attentive? I have people I call each day like this. I think it's very important (for mental health, for just staying upbeat) that everyone have someone to talk to. Sometimes talking to a real human being each day for 10 minutes makes a big difference. Maybe you could cold call some people? Sometimes people who care about you don't realize you have needs.

Yeah, this really could go in the put it in an envelope and deal with it in three months category. Seriously. But if you want to do SOMETHING, how about a lite touch? I got the multi book series (All Dogs have ADHD, All Birds have Anxiety, All Cats have Aspergers, etc.) and it was just enough. And you could talk about the DSM criteria for each, who you know who fits those criteria. It can be kind of interesting. 

We don't have to do everything perfectly all the time. Is this situation going to improve or will it decline? Is this something you'd rather put in a letter to your dc for them to read later? Not everything has to be done now.

I'm sorry it's hard. Definitely put idiots on ignore. That Reddit dynamic sounds very unhealthy for you.

Edited October 29, 2020 by PeterPan

[PeterPan]

1 hour ago, Slache said:

I blame current events. Everyone is on edge.

If you think it will pass, you could just take a break from the group for a while. If you think what's coming out is how they always were, you could move on. But maybe just a break would let you sort that out. 

Do you have any hobbies or intellectual pursuits? Are your limitations also affecting your mind? When I had my problems, my brain was also not functioning optimally. But if your mind is clear, maybe you could take up a hobby or a language or something? Maybe just till January, like seeing how good you could get at it by then...

[Slache]

2 hours ago, PeterPan said:

Wow, if that's what Reddit is, maybe you need to permanently BLOCK that site from your computer for your own mental health? I mean, I get the lonliness thing, but how about something moderated or more healthy? I mean like why not a pro marijuana group or something that would actually be live and let live... (For the record, I do zero with anything weed.) But you know what I mean? Maybe a nice knitting group or something else? Some people are just TOXIC. 

Were you also doing the DDPY thing? How is that going? And since I missed it, how did you end up in bed so much? Is this going to change? 

I'm sorry you're having a hard time. I think when you have a hard time with things, you need to be extra cautious about your mental health. I had some health problems for a while, and at that time I only read *Psalms* for Bible reading. My brain just needed to stay in positivity mode. 

Can you get someone to minister to you in a tradition you believe in or with something uplifting or at least attentive? I have people I call each day like this. I think it's very important (for mental health, for just staying upbeat) that everyone have someone to talk to. Sometimes talking to a real human being each day for 10 minutes makes a big difference. Maybe you could cold call some people? Sometimes people who care about you don't realize you have needs.

Yeah, this really could go in the put it in an envelope and deal with it in three months category. Seriously. But if you want to do SOMETHING, how about a lite touch? I got the multi book series (All Dogs have ADHD, All Birds have Anxiety, All Cats have Aspergers, etc.) and it was just enough. And you could talk about the DSM criteria for each, who you know who fits those criteria. It can be kind of interesting. 

We don't have to do everything perfectly all the time. Is this situation going to improve or will it decline? Is this something you'd rather put in a letter to your dc for them to read later? Not everything has to be done now.

I'm sorry it's hard. Definitely put idiots on ignore. That Reddit dynamic sounds very unhealthy for you.

I spend most of my time on reddit in a few select groups for adults who were abused as kids and those subs are really amazing. Someone in the ASD group just responded and said he wishes his parents took my initiative and that I sound like a really great mom. So it's hit and miss, but I'll stick to my good sub right now. I should have just come here.

The DDP thing is pretty meh, but I got my yoga swing back out to start tomorrow. Long story but I finally got a Lupus diagnosis after a 15 year slow decline. I've been about 95% bedridden for about a year. I don't know at this point if that will change.

2 hours ago, PeterPan said:

If you think it will pass, you could just take a break from the group for a while. If you think what's coming out is how they always were, you could move on. But maybe just a break would let you sort that out. 

Do you have any hobbies or intellectual pursuits? Are your limitations also affecting your mind? When I had my problems, my brain was also not functioning optimally. But if your mind is clear, maybe you could take up a hobby or a language or something? Maybe just till January, like seeing how good you could get at it by then...

I just loaded my kindle up. I haven't been reading due to migraines. The migraines are gone, but so is the habit. And I started a thread to do a 20 miles in 20 days "race" in November.

[kiwik]

9 hours ago, Not_a_Number said:

I think that's right. I've seen the idea that by avoiding "labels" all we accomplish is that instead we have kids label themselves, and labeling themselves doesn't result in anything good... only in labels like "weird," "stupid," "awkward." 

This. Immature, crazy, clueless are all much less helpful than "your brain works slightly differently and this has these weaknesses but may have these strengths".

[PeterPan]

12 hours ago, Slache said:

I finally got a

Oh my, I didn't realize about the Lupus. I had two friends in college with Lupus. That's rough. 

Totally unrelated on the trauma, I did TRE with a counselor. It releases stored trauma memories in the PSOAS, etc. There's also a book The Body Bears the Burden but you probably already know about that. Anyways, I did about 40 sessions of TRE (on my own, cost nothing after I learned how) and got some long standing odd physical problems to improve. Also it improved the dissociation I had from the trauma. It didn't change my need to work on interoception or what psychs would later say. But it did improve some things. 

The weirdest thing was the bowels. I always had problems with them, and the nutritionist I used would blame me, saying I wasn't eating right. After the trauma work that totally reversed. So I don't know what else could improve, but I suppose any physical problems connected to or flowing from the trauma would have a shot. Our bodies store both declarative and pre-declarative memory, so it's amazing. I had trauma that had occurred before I had declarative memory, and that came out. 

12 hours ago, Slache said:

And I started a thread to do a 20 miles in 20 days "race" in November.

I saw that! 

12 hours ago, Slache said:

Someone in the ASD group just responded and said he wishes his parents took my initiative and that I sound like a really great mom.

That's better!