ASD Moms Support

[yourmother]

Hello!  I hope everyone has been doing well.

I have been reading about whether folks on the spectrum would rather be referred to as "Identity First/autistic person" or "person-first/ person with autism".  I keep getting mixed results and I certainly want to be educated on this as to not offend.

I haven't explained to my DS6 that he is on the spectrum.  Has anyone had this conversation?  Any tips?  Not sure if I'll tell him soon or later in life.

Great updates:  My DS is showing a lot of interest in math and time (and a combo of the two).  He still needs a lot of help with social cues, but seems to be flourishing in school.  This is the first year he will be having a birthday party at a play place with his friends from school.  I think I'm more excited than he is...lol!

Need help:  He's starting to become sensitive to sounds and is covering his ears quite a bit.  I may have to look for solutions (headphones, maybe?) when we go to places that may have loud sounds.


Please share your updates/help needed here!

[elefun]

Identity or person first is honestly what the person prefers. The majority of ASD individuals I've encountered (and myself) prefer identity first because they consider it their identity, not a piece of baggage to carry. But it's best to ask or use what the person prefers.

Eta person first is pushed hard by the non autistic community and a lot of ASD individuals find that very insulting and silencing

[elefun]

Headphones can be good, earbuds or ear plugs can be less noticeable if preferred

[litebright]

Re: Conversation about an ASD dx. YMMV, but don't be surprised if you have to have it multiple times. I had my first one with my DD1 sometime around 6 or so and while it was a big "reveal" in my head, she pretty promptly forgot about it and absolutely 100% did not remember anything about it the next time that topic came up in conversation. Like, she literally did not remember that I had told her she has ASD and explained what that meant. The same thing happened when we started discussing biology/sex, too, lol. My kids (both of them, including my NT kiddo) just didn't absorb/integrate much from those early conversations, despite my best efforts to make it age-appropriate.

So IME at least, it's not a make-or-break, you have to get all the nuances right in the first conversation, especially with a young child. And what DD1's ASD looked like at six, and the interventions she received (and might have wondered about), also are very different than where she is now at 14.

[namasteak]

We had the ASD conversation gradually, multiple times . Starting with “your brain works differently than most kids” and moving up to the diagnosis name.

Ds1 is too young to have an opinion in the language issue but DH is also on the spectrum and doesn’t care .

[raleighnc]

At least with my daughters, there was a very clear difference in how they felt navigating early years of having ADHD (and social (pragmatic) communication disorder and anxiety for my older daughter). Granted, we didn't have a diagnosis for DD1 until third grade, so she was struggling behaviorally/organizationall/impusively, but knowing what made her brain different made her a lot more comfortable in her own skin. Without knowing there was a biological/chemical/structural reason behind her challenges, she just felt "wrong." DD2 got a diagnosis in K and we told her right away (and she already knew about it from DD1). She will tell you all the many ways in which ADHD makes it easier for her to do math and be creative but makes it hard to keep her room clean and sleep. So in our experience, they definitely knew they were not neurotypical and not the same as other kids in their class, but DD1 thought something was wrong with her brain. She needed the words. She's very open about her diagnoses and what causes them and how she copes with them and how the medicines help, which is awesome. And most kids seem to be pretty accepting so far. I still haven't told my mom about my depression, and it's been 20 years, so mad props to DD1, lol. She really likes to look at brain scans and other data. Good luck!

[purplinsky]

My DD was recently diagnosed a month or two ago and we talked about it before the eval and after. We had started to suspect things over the past year and it finally got to the point that an evaluation seemed appropriate. I think it helped that she's been in therapy for a few years now and there have been a lot of discussions about how some people's brains work different than other people's brains. Honestly, my DD did not seem surprised by any of it and she was actually happy to do the eval because she already knew she was a bit different than her peers. Plus, she's 12 years old, so that helped too, but even at 6 I think she would have been okay with a conversation about how brains work differently and then move into how some differences are labeled with a diagnosis. Overall, I'm a big fan of informing kids early so that it's just the norm for them over time versus waiting until an arbitrary age.

[macmars45]

I told my DS not too long after we got his diagnosis last summer. The your brain works differently than others. It's not right or wrong/good or bad. It just is. He was 5y2m at the time. We talk about it quite openly at home as it comes up. Just the other night right before bed DS(almost 6 now) asked me if he has Autism. *shrug* We'll continue to have conversations with him.

I don't expect DS to have an opinion on person or diagnosis first for a while yet. I'll do person first until we know what his preference is.

DS has noise canceling headphones. He doesn't like to wear them for long periods of time but while the popcorn popper/blender/vacuum are going he will. He has also been more sensitive to noise lately as well. Mostly he just puts his hands over his ears and/or tells people they're being too loud if it's a place where multiple people are having a loud conversation. We remove him from situations like that if at all possible as/when we notice he is struggling. He has gotten better at communicating that to us thankfully.

I put in a random thread last week that DS qualifies for an IEP in speech and supports from OT! H and I were both knock me over with a feather surprised (and pleased). We thought if anything he'd get a 504 plan. We move forward with the goal setting meeting next week.

Anyone else have kiddo who struggles hard with sleep? We already have a weighted blanket for DS and I plan to ask his pedi about melatonin at his yearly checkup next week. Based on what he says, his tiredness level and how often he wakes H and me up in the middle of the night to be tucked in I'd guess he's awake most nights for a while in the middle of the night as well as it taking him 1-1.5+ to go to sleep most nights. I'd guess we move forward with some kind of sleep study?

[yourmother]

Apr 18, 2022 10:58:35 GMT -5 litebright said:

Re: Conversation about an ASD dx. YMMV, but don't be surprised if you have to have it multiple times. I had my first one with my DD1 sometime around 6 or so and while it was a big "reveal" in my head, she pretty promptly forgot about it and absolutely 100% did not remember anything about it the next time that topic came up in conversation. Like, she literally did not remember that I had told her she has ASD and explained what that meant. The same thing happened when we started discussing biology/sex, too, lol. My kids (both of them, including my NT kiddo) just didn't absorb/integrate much from those early conversations, despite my best efforts to make it age-appropriate.

So IME at least, it's not a make-or-break, you have to get all the nuances right in the first conversation, especially with a young child. And what DD1's ASD looked like at six, and the interventions she received (and might have wondered about), also are very different than where she is now at 14.

This is very helpful.  My DS isn't always focused on the conversations we have.  So he very well may forget if I tell him soon.

[penguingrrl]

Apr 18, 2022 12:58:29 GMT -5 macmars45 said:

I told my DS not too long after we got his diagnosis last summer. The your brain works differently than others. It's not right or wrong/good or bad. It just is. He was 5y2m at the time. We talk about it quite openly at home as it comes up. Just the other night right before bed DS(almost 6 now) asked me if he has Autism. *shrug* We'll continue to have conversations with him.

I don't expect DS to have an opinion on person or diagnosis first for a while yet. I'll do person first until we know what his preference is.

DS has noise canceling headphones. He doesn't like to wear them for long periods of time but while the popcorn popper/blender/vacuum are going he will. He has also been more sensitive to noise lately as well. Mostly he just puts his hands over his ears and/or tells people they're being too loud if it's a place where multiple people are having a loud conversation. We remove him from situations like that if at all possible as/when we notice he is struggling. He has gotten better at communicating that to us thankfully.

I put in a random thread last week that DS qualifies for an IEP in speech and supports from OT! H and I were both knock me over with a feather surprised (and pleased). We thought if anything he'd get a 504 plan. We move forward with the goal setting meeting next week.

Anyone else have kiddo who struggles hard with sleep? We already have a weighted blanket for DS and I plan to ask his pedi about melatonin at his yearly checkup next week. Based on what he says, his tiredness level and how often he wakes H and me up in the middle of the night to be tucked in I'd guess he's awake most nights for a while in the middle of the night as well as it taking him 1-1.5+ to go to sleep most nights. I'd guess we move forward with some kind of sleep study?

My 12 year old was just diagnosed with autism and sleep has always been an issue, since birth. Now they can’t break out of a 27-hour cycle and are unable to keep a consistent schedule in the rest of their life as a result. Apparently neurodivergent folks often have significant trouble sleeping from what I’ve been reading (and it jives, my siblings are both neurodivergent and also have sleep disorders).

[penguingrrl]

Also, when I told my 12 year old (obviously they were older and aware they were being evaluated) they laughed really hard and said “ya think?!?!” No huge discussion needed. My 9 year old is being evaluated as well. If he gets diagnosed we plan to tell him. I don’t think it needs to be a big reveal, it’s a piece of who they are. I do think kids knowing from when their parents know is a good thing, it helps them know how to advocate for themselves if/when they need to.

[mysteriouswife]

I’ve posted a few times about my DS (6). He isn’t DX ASD, but his school counselor believes he is. He is DX OCD induced anxiety with sensory processing. He has selective mutism at times. We are working to get an actual DX for that. We haven’t told him flat out he is “different.” He knows. He can tell when he is in large groups or we are out and about. He questions why he does certain things no one else does. TBH I have never thought to explain to him what his diagnoses are. I guess this is a conversation I need to bring up with H and during our 504 review.

I do have a question for those with OCD children. DS os obsessed over the time we do something. If we are off by a min he melts all the way down. He is worried we will miss his bedtime. He counts down the mins. For example Friday night we stayed up later than normal. He has to be in bed before 9. (Self enforced rule) he noticed it was 9:17. He spiraled into a panic attack. He had erratic breathing, crying, stemming, the whole thing. He has reminded us 10+ times a day his bedtime is before 9. This morning he made sure to tell us is it’s a school day and we cannot pick him up until 5:45. It’s is very specific timing and very emotional for him.

Any advice on how to help him? I have contacted his doctor. I think we need to reevaluate OT and therapy again. It was stopped due to Covid. Our insurance pushed back on paying for it since he’s in school. So this will be fun to navigate

[mysteriouswife]

Also add us to the never sleeps group. We have to do melatonin. His OCD spirals when he’s tired.

[raleighnc]

Apr 18, 2022 14:47:37 GMT -5 mysteriouswife said:

I’ve posted a few times about my DS (6). He isn’t DX ASD, but his school counselor believes he is. He is DX OCD induced anxiety with sensory processing. He has selective mutism at times. We are working to get an actual DX for that. We haven’t told him flat out he is “different.” He knows. He can tell when he is in large groups or we are out and about. He questions why he does certain things no one else does. TBH I have never thought to explain to him what his diagnoses are. I guess this is a conversation I need to bring up with H and during our 504 review.

I do have a question for those with OCD children. DS os obsessed over the time we do something. If we are off by a min he melts all the way down. He is worried we will miss his bedtime. He counts down the mins. For example Friday night we stayed up later than normal. He has to be in bed before 9. (Self enforced rule) he noticed it was 9:17. He spiraled into a panic attack. He had erratic breathing, crying, stemming, the whole thing. He has reminded us 10+ times a day his bedtime is before 9. This morning he made sure to tell us is it’s a school day and we cannot pick him up until 5:45. It’s is very specific timing and very emotional for him.

Any advice on how to help him? I have contacted his doctor. I think we need to reevaluate OT and therapy again. It was stopped due to Covid. Our insurance pushed back on paying for it since he’s in school. So this will be fun to navigate

Is he taking meds for the OCD? My daughter's anxiety got SO much beetter on Lexapro. I thought she just had medical/dental anxiety until her psychologist had her write out her top worries and there were like 12 of them. The therapy has helped (she's done DBT and EMDR), but there was a huge change with Lexapro. I apologize if you've already shared this. she's also in a group for kids with anxiety where they practice different coping strategies and recognizing their circles of control, etc.

For everyone else whose kids struggle with sleep, I wish I had taken DD2 to a neurologist years earlier. We did melatonin which helped her fall asleep but not stay asleep (common with melatonin), and then a melatonin/herbal supplement called Luna. We finally took her to a neurologist recommended by the pedi, and she had a whole host of options to try beyond the usual sleep hygiene lecture. She almost never does a sleep study unless there are other symptoms of sleep apnea (since it's not as common in children), especially for kids who are neurodivergent since the sleep issues are so common. With her, we tried extended release melatonin, then cyproheptadine, then hydroxyzine, then hydroxyzine with clonidine (clonidine for falling asleep, hydroxyzine for staying asleep). As a bonus, hydroxyzine (and cyproheptadine) often stimulate appetite. She's got more options if these stop working. She says she almost never uses actual sleep meds (like Ambien), but there are a lot of other ones that help encourage sleep. DD1's sleep improved with Lexapro.

[momof2]

I don’t typically post in this thread, because my daughter’s situation is so extreme that it doesn’t seem relevant here. She has a genetic disorder that causes profound autism and intellectual disability.

But I do want to add my support for the idea of “see an actual pediatric neurologist that is a sleep specialist” if you live in an area with this type of speciality. These doctors can be a godsend. And neither your child nor your entire family has to suffer from sleep deprivation without help. We went from 3 hours of sleep out of 24 to 5 hours of sleep out of 24 — which was a miracle. Of course, our situation is still extreme.

The reality is that if your normal pediatrician saying “sure, give them
Some melatonin” isn’t sufficient — get yourself to the neurologist!!

[macmars45]

Thank you momof2 and raleighnc. As I said in my post my DS has his yearly checkup with his pedi next week. Thank you for giving me more information to approach this subject with her.