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#1 Pegs

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Posted 19 March 2017 - 08:58 AM

DS7 has ASD, level 1. This was not a surprise to me. It was a fairly lengthy (and exhausting!) assessment by a developmental paed and a clinical psychologist which ended with an ADOS exam, and then they delivered the news to me and tried to explain why it all took so long - close to five hours! I don't have the report yet.

So. What now?

Is there anything special I need to know or do? Or not do?

I've told DS already. He knows that he has different needs compared with many other children. He knows that there are some things which come very easily to him, and not to others, and I've let him know that sometimes he'll notice that things which seem to come easily to others might be challenging for him, because of the way he thinks and learns. And the word for that difference is autism. I used crowds as an example of something he finds challenging, because I was able to also point out that he can wear his earmuffs and still get out and about. But the reason most people don't need earmuffs? Well, most of them don't have autism!

The conversation went well. I don't think I made a complete hash of it.

The diagnosis has been mostly a non-issue for me. A small part of me was worried that the assessors would turn straight back to me and say, "Nope. He's just weird because you're weird." So actually it's been a bit of a relief, in a selfish kind of It's-not-my-fault!!! way.

Another part of me is a little sad that some of his struggles are going to stick. I watch him growing and maturing in so many ways, but he is also really vulnerable to anxiety, and it's a cruel comorbidity which traps his beautiful little mind.

It's the middle of the night here, and I'm posting from my phone and getting teary, so I might wrap up now.

But basically I just wanted to introduce myself and our situation, as I expect I'll be spending a little more time in these parts.

Thanks for having me.
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#2 Tanaqui

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Posted 19 March 2017 - 09:12 AM

The diagnosis has been mostly a non-issue for me. A small part of me was worried that the assessors would turn straight back to me and say, "Nope. He's just weird because you're weird." So actually it's been a bit of a relief, in a selfish kind of It's-not-my-fault!!! way.

 

That's fairly normal. There are many, many adult autistics who get diagnosed because a child in their family gets diagnosed and suddenly everybody goes "Hey...." The Broader Autism Phenotype is also a thing. So it is absolutely plausible that he IS weird because you're weird - because autistic traits are heritable.


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#3 Pegs

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Posted 19 March 2017 - 09:17 AM

Well, yeah. I was diagnosed years ago.

I guess I was worried that putting my child under the microscope would bring my parenting under scrutiny, and that harsh conclusions would be drawn wrt the environment I provide.
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#4 Tanaqui

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Posted 19 March 2017 - 09:24 AM

Ah, well, now I just sound silly :)

 

I guess I was worried that putting my child under the microscope would bring my parenting under scrutiny, and that harsh conclusions would be drawn wrt the environment I provide.

 

I find that even stepping out the house can cause that to happen, so I try not to worry about it.


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#5 Pegs

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Posted 19 March 2017 - 09:34 AM

No, I really appreciate you stopping by. Not silly. :)

Oddly enough, I get a lot of compliments on my parenting when out and about. Shrug. I'm not sure why the formal assessment had me so on edge. Maybe because my mental health hasn't been fabulous of late, and I've been quizzed about how this affects DS' days. It really doesn't. I guess it's put me on a back foot because recently in other settings I've felt like I've had to prove that I haven't compromised his development by having my own struggles.

So, it will be nice to be able to seek support for him and have people recognise that it's perfectly reasonable because autism! And not just because autistic mother.
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#6 Pegs

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Posted 19 March 2017 - 09:39 AM

Of course any parent, autistic or not, should be able to seek support for a child who needs it.

I'm just feeling a little extra sensitive to scrutiny at present, so I'm grateful that I don't have to risk exposing myself to stigma and harmful attitudes by disclosing my neuropsych status to any potential care providers who may work with DS.
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#7 OhElizabeth

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Posted 19 March 2017 - 11:25 AM

Well, yeah. I was diagnosed years ago.

I guess I was worried that putting my child under the microscope would bring my parenting under scrutiny, and that harsh conclusions would be drawn wrt the environment I provide.

 

Actually, isn't it just the opposite? It shows that you're intellectually honest and trying to do what's best for him.

 

There are social thinking interventions available now that weren't available even 10 years ago. 



#8 OhElizabeth

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Posted 19 March 2017 - 11:28 AM

Of course any parent, autistic or not, should be able to seek support for a child who needs it.

I'm just feeling a little extra sensitive to scrutiny at present, so I'm grateful that I don't have to risk exposing myself to stigma and harmful attitudes by disclosing my neuropsych status to any potential care providers who may work with DS.

 

Ok, this is my personal opinion, but I suggest you find a BCBA or behaviorist whom you feel comfortable being straight with. You don't have to talk that openly with OTs, SLPs, RBTs (in-home therapy workers), etc. There are levels of friendship, levels of relationship, and those people have no need to know. If they figure it out, that's their business. 

 

With the behaviorist, if you can find someone you feel really comfortable with, s/he could help your whole family grow, by making sure *you* come along with the things he is learning. You could choose to go to Social Thinking workshops to learn the materials and concepts the behaviorist will be using with your dc. After all, YOU are still the dominant force in his education, the one with the most hours. The more you learn and grow, the more you'll be able to help him. :)


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#9 Kinsa

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Posted 19 March 2017 - 11:39 AM

Hi, Pegs! I just wanted to pop into your thread and welcome you to this weird world of special needs that we live in. :)

I love how you handled the "big reveal" with your son. My niece's son was just diagnosed last week as being on the spectrum, and she was wondering how to tell him. I like your approach. I'm going to suggest it to my niece, if that's okay?

Btw, I'm not parenting an autistic child, but one with "intellectual disability with autistic tendencies" (whatever the heck that's supposed to mean - lol). Welcome to the group!

Edited by Kinsa, 19 March 2017 - 11:41 AM.

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#10 Crimson Wife

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Posted 19 March 2017 - 11:40 AM

 
I'm just feeling a little extra sensitive to scrutiny at present, so I'm grateful that I don't have to risk exposing myself to stigma and harmful attitudes by disclosing my neuropsych status to any potential care providers who may work with DS.

 

Just because a question is listed on the intake form does NOT mean you are required to disclose the answer. As a (fingers crossed) future SLP, it can be helpful for diagnosis to know what things run in the family, but now that you have the diagnosis, there is no reason IMHO to disclose to any service providers you are considering UNLESS you feel comfortable doing so.


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#11 OhElizabeth

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Posted 19 March 2017 - 12:02 PM

I can't remember family history being on intake forms for SLP, OT, etc. Neuropsych, yes. But I may not be remembering. Just saying, if you're worried they're asking, they aren't.


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#12 kbutton

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Posted 19 March 2017 - 02:20 PM

Oddly enough, I get a lot of compliments on my parenting when out and about. Shrug. I'm not sure why the formal assessment had me so on edge. Maybe because my mental health hasn't been fabulous of late, and I've been quizzed about how this affects DS' days. It really doesn't. I guess it's put me on a back foot because recently in other settings I've felt like I've had to prove that I haven't compromised his development by having my own struggles.

So, it will be nice to be able to seek support for him and have people recognise that it's perfectly reasonable because autism! And not just because autistic mother.

 

I do not have a diagnosis, but I do have things that influence my own feelings of being up to the challenge of parenting a non-NT kid (well, kids). I have definitely had my parenting praised and scrutinized, sometimes by the same people in a week's time. It was very validating for me to have a diagnosis for my 2e ASD son and for my other child with his own alphabet soup. I don't think that's a selfish thing. I think it's realistic and affirming to know one's instincts aren't totally off and to feel like your own responses to your child (different parenting choices, etc.) are based on those instincts.

 

It's really normal to feel exposed, sad, encouraged, discouraged, relieved, lost, and found all at the same time around diagnosis time.

 

:grouphug: , and welcome! I think you explained things really well to your son.

 

As for what to do/not do, I think that there are skills that will be a challenge, and you might want to know which ones "matter" (to him, to you, to his future ability to do what's important to him). There are "being" issues that it sounds like you are already aware of--how to be comfortable inside his own skin and deal with his particular challenges. Which pieces and parts are the most difficult for your son might be different from your own ways of relating to things (or maybe the same), and they will be different compared to other kids with ASD. I think keeping an open mind about what works and why will help you sort a lot of things. It sounds like you are very observant and sensitive to your son's development.
 

I have to be kind of stealthy about seeing issues with my son. He's not one to just speak up, but some kids with ASD are super blunt and will just tell you, lol! 

I think you have time to observe, read, make notes, etc. and then prioritize how to best support your son. We have used a variety of professionals for a variety of things, and some things are still a surprise, but it's okay. I feel like I can often spot a difficulty, but I might not figure out on my own the full view of why the difficulty exists or what can help until I read or hear about others facing the same issue (and they might be facing it in a bigger or smaller way). I think learning about the full range of possible things that can come up with kiddos who have ASD has helped me utilize more effective resources even though my son struggles with his own personal mix of things.


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#13 Pegs

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Posted 19 March 2017 - 06:03 PM

Thank you all for your warm welcomes and thoughtful responses. :)

#14 Pegs

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Posted 19 March 2017 - 06:13 PM

Ok, this is my personal opinion, but I suggest you find a BCBA or behaviorist whom you feel comfortable being straight with. You don't have to talk that openly with OTs, SLPs, RBTs (in-home therapy workers), etc. There are levels of friendship, levels of relationship, and those people have no need to know. If they figure it out, that's their business.

With the behaviorist, if you can find someone you feel really comfortable with, s/he could help your whole family grow, by making sure *you* come along with the things he is learning. You could choose to go to Social Thinking workshops to learn the materials and concepts the behaviorist will be using with your dc. After all, YOU are still the dominant force in his education, the one with the most hours. The more you learn and grow, the more you'll be able to help him. :)


I'm not yet sure how I feel about behavioural intervention stuff, but I thank you for making the suggestion.

So far the biggest behavioural hurdle we've had has been anxiety manifesting as food avoidance/restriction. I addressed this about a year ago using a mostly-DIY Maudsley/FBT approach (with the support of a paed), with moderate success. It's still a work in progress, but we're a long way from where we were.

Stimmy behaviours aren't a problem here. We live a pretty autism-friendly life anyhow.

Sensory stuff requires accommodation, but I don't think that's so much an intervention thing, is it? DS, insightful little fellow, has shared that the noise at gymnastics classes doesn't bother him too much because he knows to expect it, so he can adjust his ears. I'm not sure exactly what he means by this, but it seems to he working for him.
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#15 Pegs

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Posted 19 March 2017 - 06:23 PM

Hi, Pegs! I just wanted to pop into your thread and welcome you to this weird world of special needs that we live in. :)

I love how you handled the "big reveal" with your son. My niece's son was just diagnosed last week as being on the spectrum, and she was wondering how to tell him. I like your approach. I'm going to suggest it to my niece, if that's okay?

Btw, I'm not parenting an autistic child, but one with "intellectual disability with autistic tendencies" (whatever the heck that's supposed to mean - lol). Welcome to the group!


Thanks! Yes, you are most welcome to share. I'm flattered that you wish to do so. :)

If it helps any, I opened with, "You know how we went and spent time with those people who were interested in how children play and learn? Well they really enjoyed learning from you, and found you really interesting. They told me a little bit about some of the stuff they figured out while you were playing together - things about the way you think, and how you solve problems, how you use language."

DS interjected that he is good at solving problems, and the strengths and challenges (I didn't talk about relative weaknesses) and autism chat followed from there.

We also talked about some of the things he's good at, and how those can be part of autism too. Exceptional memory, ability to learn a lot about a topic of interest, being creative about finding ways to move which feel good and calm our bodies, etc.
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#16 Pegs

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Posted 19 March 2017 - 06:25 PM

Just because a question is listed on the intake form does NOT mean you are required to disclose the answer. As a (fingers crossed) future SLP, it can be helpful for diagnosis to know what things run in the family, but now that you have the diagnosis, there is no reason IMHO to disclose to any service providers you are considering UNLESS you feel comfortable doing so.


Thanks for that. I think I'll just leave my stuff out as much as I can. I don't have any trouble communicating with health professionals (when I'm not actively avoiding them!), so it's not like I need them to know so that they can adjust the way they communicate with me about DS.
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#17 Pegs

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Posted 19 March 2017 - 06:36 PM

I've snipped this quote to make it more manageable on my phone screen. Hope you don't mind.

As for what to do/not do, I think that there are skills that will be a challenge, and you might want to know which ones "matter" (to him, to you, to his future ability to do what's important to him). There are "being" issues that it sounds like you are already aware of--how to be comfortable inside his own skin and deal with his particular challenges. Which pieces and parts are the most difficult for your son might be different from your own ways of relating to things (or maybe the same), and they will be different compared to other kids with ASD. I think keeping an open mind about what works and why will help you sort a lot of things. It sounds like you are very observant and sensitive to your son's development.

I have to be kind of stealthy about seeing issues with my son. He's not one to just speak up, but some kids with ASD are super blunt and will just tell you, lol!

I think you have time to observe, read, make notes, etc. and then prioritize how to best support your son. We have used a variety of professionals for a variety of things, and some things are still a surprise, but it's okay. I feel like I can often spot a difficulty, but I might not figure out on my own the full view of why the difficulty exists or what can help until I read or hear about others facing the same issue (and they might be facing it in a bigger or smaller way). I think learning about the full range of possible things that can come up with kiddos who have ASD has helped me utilize more effective resources even though my son struggles with his own personal mix of things.


Yes. I'm nodding along. I can see that I need to do some reading on ASD in general so that I can more easily identify issues which require more or different support as they come up.

The social stuff is a bit of a tricky one, I'm finding. Is it very different for 2E kids? My DS is almost certainly gifted also (he's well ahead in mathematics and science, has exceptional memory, vocabulary, enjoys beautifully crafted prose and says so).

If you wouldn't mind sharing, here or by PM, I'd love to hear about how you've supported your 2E kid in terms of finding peers, conversing with other children, etc.
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#18 kbutton

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Posted 19 March 2017 - 07:25 PM

I've snipped this quote to make it more manageable on my phone screen. Hope you don't mind.

Yes. I'm nodding along. I can see that I need to do some reading on ASD in general so that I can more easily identify issues which require more or different support as they come up.

The social stuff is a bit of a tricky one, I'm finding. Is it very different for 2E kids? My DS is almost certainly gifted also (he's well ahead in mathematics and science, has exceptional memory, vocabulary, enjoys beautifully crafted prose and says so).

If you wouldn't mind sharing, here or by PM, I'd love to hear about how you've supported your 2E kid in terms of finding peers, conversing with other children, etc.

 

I think it's more about what kind and level of support they need than about 2e only. Yes, there are differences with 2e, but there are also some things that are very,  very similar, it's just that they happen at a different point on a continuum. Also, I think my son has "grown into" his ASD in some ways. It took longer (in some ways) for him to show his difficulties because there are some things he compensated well for. 

 

2e can help in some ways, but it depends on a child's self-awareness. Some 2e kids with autism would not know that they are upset about the loud noises your son is working around. So, your son has a level of self-awareness that another 2e child with ASD might not have. My son is more like your son--he usually can find ways to cope, and he often identifies his own issues. (But not always, and it doesn't always mean he self-advocates.) But it can come at a toll, so we do have to accommodate his need for peace and such while stretching his tolerance (he won't always have this environment). We have used a lot discussion for this, plus OT and vision therapy (he had strabismus). We also use ABA, but we didn't understand much about how that could be used for a 2e kid, so that's "newer" for us. We've found it to be good and respectful of who he is as a person.

 

We have had social skills help too (with a behaviorist)--my son could not grade emotions, responses, and facial expressions. He could say they are negative or positive, and that was it. He could not distinguish between types or reasons for shades of positive or negative emotions and expressions. That was really hard on him because he didn't understand being in a little trouble or a lot of trouble, for instance. He would give up because things would be all bad. But he didn't strike people as being overly black and white, so that was interesting. He currently struggles to get the social connotations in fiction. His reading level (and comprehension of facts) is over the moon, but in a book that is well below his reading level, he hates predicting responses of characters, and he doesn't get social nuances like how the characters in the book knew who to trust, for instance. I am hoping we can get some help with that. 

 

Also, in spite of his amazing reading comprehension, abstract concepts (some not all) are difficult for him. He can almost always take in and comprehend a discussion about abstract things, but he doesn't receptively understand them through reading. This varies by subject matter though. Science is not an issue, and he has strong math skills (though he doesn't store or recall information in ways that a test will always bring out--he frequently will be like, "Why didn't they just ask x?").

 

My son was not diagnosed until he was 9, and while we knew he was 2e, the autism was a surprise. It surprised some adults that knew him, and some wouldn't have thought of autism, but then immediately saw it when the diagnosis came down that way. He went to a small Christian school for K-2, and that school had an awesome school counselor as well as teachers who were very much about helping the kids be friends. He also did afternoon kindy, which meant that his first year of school was in a tiny class--7 kids. Everyone else wanted AM Kindergarten. So, we eased into things, and we had a good environment. I brought him home due to academics and communication with teachers. They were nice people, but things were getting stressful academically.

 

My son is pretty aware that other people are different from him, but he likes people in general. There are a lot "cool kid" types that he is leery of. I think he has a fairly strong radar for people who are not likely to be nice to him, but it's still a little glitchy. 

 

A lot of his social interactions when he was younger were scaffolded. We often did things with entire families vs. 1:1 friends. There was another boy at church who is a lot like him (probably on the spectrum too), and while we are not in that church anymore, when they were little, the other mom and I realized that they needed help getting along and provided that help (or instruction to nursery workers). They would be fine until suddenly they set each other off. It was pretty wild. Also, my son attended a Montessori preschool, so things were structured. Activities were solo unless you gave another child permission to do the activity with you. Activities had their own tables, trays, mats, etc. so personal space and respect were built into the program. My won would observe and then mimic. 

 

Honestly, he is quite good at fake it until he figures it out or does "well enough." He has always been highly motivated to communicate though, and I found out that I am a pretty darn good mind reader. I think that kept reinforcing his desire to communicate, and I helped fill in the gaps without really realizing what I was doing. I defaulted to explaining everything to him, no matter how small. 

 

My son also has a lot of mainstream interests--the convenient thing about some 2e kiddos with ASD is that they often have serial or multiple special interests, not just one overriding one.

 

However, there are 2e kids with ASD who are every bit as challenged as kids of more typical IQs. I would say that for my son, his struggles just occur at a higher level. The reading thing is a good example. He's truly capable of reading high level material, but he glitches at certain types of abstract thinking, and the social glitches also hamper his understanding of some types of material. But he's not hyperlexic. Sorting, labeling, and categorizing is another place he glitches. He can often match up categories and details, but he can't always look at a list of details and name the concept, but instead of it appearing with ordinary items (like all fruit being called an apple from mixing up a specific item with a category), it will be with more abstract skills. This happens a lot when he's trying to write an essay or something like that. It's also not so much a comprehension issue for him as an output issue.

 

HTH 


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#19 Pegs

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Posted 19 March 2017 - 07:43 PM

Thank you so much. I really appreciate you taking the time. I'll sit on this for a bit and come back to it. :)

#20 Rosie_0801

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Posted 19 March 2017 - 10:27 PM

You're a good mamma Pegs. :)



#21 Moved On

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Posted 19 March 2017 - 11:55 PM

Edited for privacy.

Wishing all the best to you and your son!


Edited by Moved On, 18 August 2017 - 07:01 PM.

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#22 Pegs

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Posted 20 March 2017 - 02:00 AM

You're a good mamma Pegs. :)


Backatcha, Rosie. <3
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#23 Pegs

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Posted 20 March 2017 - 02:02 AM

Thanks for the welcome, Canadian Mom.

I'm checking my libraries for the books you've recommended. Thank you for the suggestions.
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#24 kbutton

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Posted 20 March 2017 - 02:06 PM

This book is very dry, but I really like it: https://www.amazon.c...e/dp/1853029645

 


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#25 Moved On

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Posted 20 March 2017 - 03:38 PM

Deleted for privacy. 

 

Edited by Moved On, 18 August 2017 - 07:01 PM.

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#26 OhElizabeth

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Posted 20 March 2017 - 04:49 PM

For ds, we found that starting in the summer, when there were less people, was a way to get used to the noise of gymnastics. However tolerating that has NOT generalized to tolerating other situations. So I turned on a thunderstorm mp3 track for a party I'm doing, and he flipped out and switched it off 3 times and had behaviors! And that was some measly thunderstorm music, when it's much louder in the gym. And he had been doing better with hand dryers and now isn't. That's very perceptive on your ds' part that mentally preparing ahead of time for expectations can help him stay calm and use calming strategies.

 

I think the main thing when approaching the idea of a behaviorist is to find someone you can agree with or work with, rather than ASSUMING you know what they do or what they are like. Yes you'll find really bad eggs and extreme things and things you won't agree with. However in our area I was able to latch up with someone I feel exceptionally comfortable with. You might find someone who is of similar philosophy to you. You aren't crazy for having your concerns, and you might find a kindred spirit.

 

I think it's helpful to have outside perspective on the things you don't know. I'm like you, like really advocating hard for my kids. My behaviorist comes in and sees with fresh eyes and sees MORE potential than I saw. It always expands my world. And she's not harsh or aversive like I read about on some blogs. But that's what surprised me, how helpful it was to be stretched, for someone to say I know where we can get to if we work TOGETHER. I like not being alone. I'm a pretty alone person in how I do things, but in this, I really like not being alone.


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#27 Moved On

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Posted 20 March 2017 - 07:50 PM

There's a process called desensitization. It is used by psychs to help with phobias and can also be used for sensory stimuli. Temple Grandin talks about it in her book *The Way I See It*. It is supposed to be gradual and the person is supposed to have control over the situation while being supported through it. Now that I think about it, it is mentioned in *Uniquely Human* as well.

I get that some people feel the need for help. There are other therapies out there besides ABA, though. It's not like it's the only option! In ABA, the BCBA goes through the list of solutions that have been known to work for a behavior and then tries them to see which will be more effective for the child. There's no personalization. That might be fine with some parents but not with others.

Bottom line, just like our children are different, so are we as parents. We have the right to approve or disapprove of something for our own personal reasons. We don't all have to agree.


Edited by Moved On, 18 August 2017 - 07:03 PM.

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#28 Moved On

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Posted 20 March 2017 - 07:58 PM

Deleted for privacy.  

 

Edited by Moved On, 18 August 2017 - 07:04 PM.

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#29 Pegs

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Posted 20 March 2017 - 09:34 PM

Following. Processing.

We have a new funding scheme rolling out here halfway through this year. I'm thinking we'll see an OT and a psychologist before then to get an idea of the most useful services to apply for, and see how we go.

So far sensory stuff and anxiety are borderline-pressing issues. And without going into too much detail, we'll be addressing a rather idiosyncratic toileting habit over the next couple of months.

Social stuff will be a more long-term evolution of explorations, methinks.

How does this sound so far?
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#30 OhElizabeth

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Posted 20 March 2017 - 11:06 PM

If your funding will pay for it, start with the behaviorist and OT. The behaviorist will be your umbrella person, helping you coordinate all kinds of ideas, approaches, and fields. They can help you implement in the home the strategies of the OT. They can help you with the toileting. They can work on social thinking. They can do all kinds of things for you. 

 

What do you want the psychologist for? You want counseling or the first diagnosis was an MD? 

 

Btw, that's pretty spectrum to want to do one thing at a time. I get it, but if you let the behaviorist help you and bring in that help you might find they can make more things happen. So then you can work on your toileting AND social thinking AND... It's not like they're so terribly separate. Just because you can't handle working on them all at once (which I get!), doesn't mean they couldn't be worked on and worked on happily if you brought in the help. You might find you actually *like* that kind of help, if you find someone you trust and communicate well with.


Edited by OhElizabeth, 20 March 2017 - 11:08 PM.


#31 Pegs

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Posted 21 March 2017 - 12:53 AM

If your funding will pay for it, start with the behaviorist and OT. The behaviorist will be your umbrella person, helping you coordinate all kinds of ideas, approaches, and fields. They can help you implement in the home the strategies of the OT. They can help you with the toileting. They can work on social thinking. They can do all kinds of things for you.

What do you want the psychologist for? You want counseling or the first diagnosis was an MD?

Btw, that's pretty spectrum to want to do one thing at a time. I get it, but if you let the behaviorist help you and bring in that help you might find they can make more things happen. So then you can work on your toileting AND social thinking AND... It's not like they're so terribly separate. Just because you can't handle working on them all at once (which I get!), doesn't mean they couldn't be worked on and worked on happily if you brought in the help. You might find you actually *like* that kind of help, if you find someone you trust and communicate well with.


I have no idea yet what funding will cover, but the initial report (from the people who made the diagnosis) will recommend OT and psychological support. I don't think we have behaviourists around here. I did a search in our city and got a lot of hits for people who train dogs.

There's a clinic which offers ABA for younger children with certain funding packages, but those are being phased out anyhow. It's all a bit up in the air at present.

Psychologist because I think comorbid anxiety will be DS' most significant challenge for some years, and I'd like to give him the opportunity to develop rapport with someone over time so that CBT and the like become more accessible to him. I think he has sufficient insight and motivation for this, and I think he'll grow into self-advocacy very comfortably.

As he sets goals and finds motivation to change behaviours which are holding him back, I'll be here to support him. But it's his journey.

As for my rather spectrummy approach to all of this ... Well. Yes. You're going to get that, hey? ;)

I'm not compartmentalising problems in order to make them more manageable - I just honestly don't see many problems needing fixing right now. I'm already providing ongoing support for managing life with anxiety and sensory overwhelm, and have done for years. I understand that sometimes there's a fine line between accommodating needs and enabling avoidance. I know that at times I will err. I'd appreciate additional support with this. But generally we're bumbling on through pretty well, yk?
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#32 Rosie_0801

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Posted 21 March 2017 - 12:58 AM

I don't think your boy would do too well being told to trust too many professionals at once either. :lol:



#33 Pegs

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Posted 21 March 2017 - 01:01 AM

I don't think your boy would do too well being told to trust too many professionals at once either. :lol:


He tends to find them more-than-mildly patronising. I just can't understand it...
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#34 Rosie_0801

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Posted 21 March 2017 - 01:04 AM

He tends to find them more-than-mildly patronising. I just can't understand it...

 

:smilielol5:

 

It's nice to know I'm not alone.  :cheers2:



#35 Moved On

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Posted 21 March 2017 - 01:13 AM

nm


Edited by Moved On, 18 August 2017 - 07:04 PM.

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#36 Moved On

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Posted 21 March 2017 - 01:16 AM

nm 

 


Edited by Moved On, 18 August 2017 - 07:04 PM.

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#37 Pegs

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Posted 21 March 2017 - 01:17 AM

Yah, that's exactly what has come across through your posts to me as well! It's the same with my 13 yr old.


I appreciate your feedback on this. :)
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#38 Pawz4me

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Posted 21 March 2017 - 04:51 AM


I'm not compartmentalising problems in order to make them more manageable - I just honestly don't see many problems needing fixing right now. I'm already providing ongoing support for managing life with anxiety and sensory overwhelm, and have done for years. I understand that sometimes there's a fine line between accommodating needs and enabling avoidance. I know that at times I will err. I'd appreciate additional support with this. But generally we're bumbling on through pretty well, yk?

 

All of what you post reminds me a lot of DS18, but especially the above paragraph.

 

I've always been about 95 percent sure DS was on the spectrum. I first started suspecting it around age 2 when he was referred to speech therapy due to apraxia. And then when he was around three and we realized his sensory issues were bad enough that he needed OT. He was also hyperlexic and extremely advanced in math. Just super smart all around, really. But the hyperlexia really stood out. At the time I didn't know there was a name for it. I thought he was "just" advanced. So did his teachers in preschool and elementary school. And every medical person and therapist said no, he can't have autism. He makes pretty good eye contact. It's not like he was a social butterfly or anything. He was like a very, very shy kid who could and would engage adequately in situations where he felt comfortable.

 

But still . . . . I knew.

 

Long way of saying he didn't have a ton of therapy or intervention. Just a few years of speech and OT.

 

When he was a teen the anxiety got bad enough that we had to pursue that. It affected his ability to eat and he was losing a ton of weight. Yes, he was getting taller but the loss of weight was really dramatic. His pediatrician diagnosed the anxiety and referred us to a psychiatrist who finally, at the age of 17, said to me "You know, I think he's on the spectrum. I'm sure he is." Finally! Someone who agreed with me! We had full psychoeducational testing done and that confirmed he's ASD-1, NVLD and intellectually gifted. Along with the generalized anxiety disorder.

 

The anxiety is undoubtedly his biggest challenge. But with medication and some therapy he is doing very well -- making plans to go off to college, advocating well for himself, functioning well as an adult. I doubt that he needs much more support from us than any other 18 year old. He certainly doesn't need more, if any, than his NT older brother. I'm referring mainly here to things that older teens need reminders to stay on top of (like submitting things to colleges, etc.).

 

Many of his sensory issues are still there but they're not nearly as bothersome as they used to be. I don't know if they've gotten better over time or if he's just learned to manage them and has adapted.

 

After his formal diagnosis we found a social skills class for older teens/young adults that meets once a week and has a couple of social gatherings a month. I think that has helped him and given him a bit more confidence.

 

All that to say that he never had a ton of professional intervention and we're pretty happy with the way things have turned out. That's not to denigrate the need for all sorts of interventions in other kids. I don't know, I'm an expert on one. But my guess is it's like just about anything--you have to take it on an individual basis and tailor things to that one kid, and what's right or absolutely necessary for one may not be right or necessary for another.

 

Good luck on your journey.


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#39 Pegs

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Posted 21 March 2017 - 05:19 AM

Pawz4me, I feel like you've just loaned me a time machine and let me have a quick sneak peek at how things work out for my DS. Thank you so much!

It sounds like our kids' autism manifests quite similarly, so it's really heartening to read that things have turned out well for your DS, and that he is generally having a good time of life.
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#40 OhElizabeth

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Posted 21 March 2017 - 07:28 AM

He tends to find them more-than-mildly patronising. I just can't understand it...

 

Oh that is hilarious. I'd love to hear the story on this. My ds just plays with them or ignores them. And if he plays with them, he's going to be telling them what to do, which means he's in charge. Your ds sounds totally different, and yes it sounds like you're working really hard to make an approach that meets his mind right where he is.  :thumbup1: 


Edited by OhElizabeth, 21 March 2017 - 07:28 AM.


#41 OhElizabeth

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Posted 21 March 2017 - 07:32 AM

Just as a total aside, my ds was really right on the line with ASD 2 when he was diagnosed. So the people who make his IEP want to think of him as ASD1, but he really pushes into ASD2. And I'm starting to wonder if he would push over if we re-ran the numbers. I don't know. What distinguishes ASD1 and ASD2 in the new DSM is that level of support. It really might explain this discrepancy. My ds seems to be needing more support as other people's need for support with ASD1 drops away. And the idea of getting through till teen years with ds with no interventions would be shocking. He just can't function in that way, without supports, not unless you consider ending up in closets and under tables functioning. :(

 

So yes, it's very interesting to hear how different other people's ASD1 presentation is. There's definitely a support difference we're describing there.

SaveSave


Edited by OhElizabeth, 21 March 2017 - 07:34 AM.

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#42 Pegs

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Posted 21 March 2017 - 08:36 AM

Aargh I just lost my reply. I'm going to try again in the morning.

#43 Moved On

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Posted 21 March 2017 - 11:40 AM

Nodding head in agreement.

But my guess is it's like just about anything--you have to take it on an individual basis and tailor things to that one kid, and what's right or absolutely necessary for one may not be right or necessary for another.


Edited by Canadian Mom of 2, 21 March 2017 - 11:42 AM.

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#44 Moved On

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Posted 21 March 2017 - 01:48 PM

nm 

 


Edited by Moved On, 18 August 2017 - 07:05 PM.


#45 Moved On

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Posted 21 March 2017 - 02:08 PM

Deleted for privacy.  

 

Edited by Moved On, 18 August 2017 - 07:05 PM.

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#46 Pegs

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Posted 21 March 2017 - 04:26 PM

Just as a total aside, my ds was really right on the line with ASD 2 when he was diagnosed. So the people who make his IEP want to think of him as ASD1, but he really pushes into ASD2. And I'm starting to wonder if he would push over if we re-ran the numbers. I don't know. What distinguishes ASD1 and ASD2 in the new DSM is that level of support. It really might explain this discrepancy. My ds seems to be needing more support as other people's need for support with ASD1 drops away. And the idea of getting through till teen years with ds with no interventions would be shocking. He just can't function in that way, without supports, not unless you consider ending up in closets and under tables functioning. :(

So yes, it's very interesting to hear how different other people's ASD1 presentation is. There's definitely a support difference we're describing there.

Save

Save


I'm about curious about the lvl 1/2 thing too, OhE. In the social/language column, lvl 1 looks about right, but as for restricted/repetitive behaviours and transitioning between activities, and that comment on the casual observer... Rosie! Help me out here? WDYT?

I'm not sure that he requires a lower level of support - it's more that he's already getting it, if that makes sense? And while support in your house means interventions, in ours it just looks a little different.

For example, I happen to believe that some people function perfectly well under tables, and have been known to homeschool in a blanket fort on occasion. :)

There is absolutely no way my DS would survive a mainstream classroom at this point, as many Aspie/ASD1 kids do.

We also use a lot of scripting before new social situations.

So, I don't know. But the more I learn about ABA, the more confident I feel that it would be a poor fit for us. DS is very fortunate to live in a very autism-friendly environment, surrounded by people who both accommodate and challenge him. This has been largely a function of let's-see-who-sticks-around. The people who've stuck have been fabulous.
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#47 Pegs

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Posted 21 March 2017 - 04:32 PM

There's also the fact that I'm a single mother of an only child - it's a pretty intense relationship. I have sole care 24/7 apart from a few hours each week, when I go to classes.

So, we know each other *really* well. I know how to preempt and accommodate for things which might otherwise restrict DS' access to the world. And on the flip side, he trusts me when I say, "I think it's time to start learning to do abc a bit differently, because that way you'll be able to xyz, and I think you'd really enjoy that! I'll help you. We'll start with something small and manageable, okay? You can trust me."
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#48 Rosie_0801

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Posted 21 March 2017 - 05:39 PM

I'm about curious about the lvl 1/2 thing too, OhE. In the social/language column, lvl 1 looks about right, but as for restricted/repetitive behaviours and transitioning between activities, and that comment on the casual observer... Rosie! Help me out here? WDYT?

 

I'm not sure enough to comment.



#49 Pegs

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Posted 21 March 2017 - 05:45 PM

Fair enough. :) I saw "casual observer" and thought of you, is all.
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#50 Moved On

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Posted 21 March 2017 - 06:07 PM

Deleted for privacy.  

 

Edited by Moved On, 18 August 2017 - 07:06 PM.

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