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mamashark

ASD Diagnosis...

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A year ago we were pretty sure our son was on the autistic spectrum. We put our name on a waiting list for a behavioral evaluation with the only place near us that took our insurance and could diagnose autism. In January 2018 we had the initial visit. We filled out tons of paperwork and the Child Behavior Checklist for Ages 1.5-5 and had a Sunday school teacher fill out the teacher version of the checklist. Her parent meeting with us after 2 visits gave us an anxiety diagnosis and recommendations for OT and a picture schedule and then illnesses (the psych got the flu) and trauma (we had a traumatic death in our extended family) delayed our next visit until April. 

In April she insisted on continuing her observation sessions and our final appointment in May saw us with almost no feedback at all. She was sticking with anxiety as a diagnosis, and told us she saw some fidgeting and some lack of focus. Our insurance changed June 1, and she was no longer covered and so we asked her for a copy of the behavioral evaluation for our records. She told us she hadn't done an official evaluation, that it would be simpler for her to have a phone conversation with the next psych we transferred to. 

Now, in the meantime we had made dietary changes and began OT, and with both, but mainly with diet, saw a big improvement in his behavior. So my husband and I made the decision to not find a new psychologist at this time, and so I formally requested a written report from her of whatever she did do so that we could have it for our records to document our time spent with her. She called me back to tell me that she went over all our paperwork and wanted us to come in to discuss the possibility of autism. I declined, stating that we weren't interested in the diagnosis at this time and simply wanted her written report.

4 months after my request for the written report, I get in the mail yesterday an official "Psychiatric Evaluation Report" that is very detailed, wholly accurate to his behavior when we begin the process (even though we've seen huge improvements since then) and a diagnosis list starting with Autistic Spectrum Disorder. She kept the Anxiety disorder as well. She gave us a laundry list of recommendations including having us go to another behavioral health professional to confirm the diagnosis of Autism.

I feel like she didn't even read the paperwork until I asked for a report. I also am shocked that she was willing to give him the ASD diagnosis without us "coming in to talk about it" like she requested of us. Maybe I misunderstood and what she meant was "I'm changing his diagnosis and want to tell you in person instead of over a written report..." And what does confirming the diagnosis mean? Is it an official diagnosis or not? 

My husband is inclined to not trust her at all given how the whole thing unfolded, and said that if our son is on the spectrum he's right on the edge of the spectrum. (Granted, he's a teacher and the kids he sees with ASD diagnosis right now are pretty obviously autistic and he doesn't have any experience with high functioning kids who might fly under the radar.) He said that people will likely define our son as "quirky" as he gets older.

And I've got a myriad of conflicting emotions and reactions to the whole thing, even though I was pretty sure he was on the spectrum when we started the process a year ago. And I live in PA, so I am not sure what the consequences of seeking ASD Services might be on our homeschooling, and a big part of me wants to just file the paperwork and ignore it entirely. 

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How old is your son? I'm glad he's responded so well to the changes you've made! 

I can't speak to the PA concerns regarding homeschooling. In my state, though, a diagnosis opens a lot of doors in terms of programs and funding. It seems to me that people with kids on the spectrum seem to end up homeschooling at a higher than would be expected percentage. 

When my son was diagnosed initially--young, around 3--everyone questioned it. My husband and grandparents especially, but even I, who saw autism in him initially, at some point brought a list of things that made me think no at that point.

She was kind--but she asked if I thought anything on that list ruled out autism. Turns out not. Then she asked me to bring in my other son (a twin). She gave him a really fun toy and let him play. Then she had me call his name. He turned and looked at me to respond. We did similar things--with her and myself. Then she had me bring in his brother, on the autism spectrum. He kept playing with that toy, and it went on. Here is the thing. Dad/my husband was there--he saw all of it too. He still was uncertain, similar to what your husband is saying. Lots of people were. He smiled too much, he was too friendly, on and on.

We did end up doing a follow up evaluation--I wanted clarification for my husband and others in our life. He was diagnosed again. Still didn't convince grandparents but my husband got on board. As he aged, his autism has become clear to everyone. But this took a long time. 

I think, from my experience, doubt about a diagnosis  or functioning level is probably not unusual. I don't know your son's age, but it's hard when kids are young to know what functioning level will be in, say, the teen years. My son's autism is more apparent now, I think mostly because the social demands and complexity increase as a child ages. Hormones change things too.  I"m told that adult functioning level isn't even necessarily dependent on what I am seeing in teen years. It's impossible to know if your son will have more significant challenges as he ages. He might not of course. In my son anxiety goes with autism (and so does ADHD). Co-occurring dx's are common in autism, and each one adds to the challenges the child faces. There have been times when the anxiety affected my son more than anything else, including autism. 

I agree that it seems as if she made that diagnosis based on the parent/teacher evaluations rather than what she saw. But it's hard to say that for sure given you weren't able to meet with her for that final session. Perhaps she would have explained, like I described, what she saw. That she recommended a confirmation evaluation would lead me to believe she wasn't certain. However, I am surprised she would formally diagnose if she wasn't certain. Can you ask her to clarify that point?

Someone who is good at evaluating even high functioning autism at your son's age should be able to determine even if he's doing really well at this time. The core issues would still be present even if behavior is better. However, the skill of the person who evaluates does matter.

It was better for me when we knew for sure. I could grieve and move on with what was. So I'd lean toward trying to figure out if you have options for a quality evaluation.

That said, uncertainty may not bother you as much as it did me. And diagnosis may not open doors where you are that it opens here. If you decide not to follow up, you might think about interventions targeted toward autism anyway. 

Edited by sbgrace
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When did you get this letter? It's really hard when you actually finally have someone put in print something you suspected but didn't want to hear. It's really hard. What you might want to do now is take some time to grieve, step back, and give it time to process. Filing it away doesn't help anything and it turns yourself away from the information you were legitimately given.

I've worked with scads of psych now with my kids, and I can tell you they all keep things close to the vest. They don't talk about their final answer, even when it's obvious, obvious, obvious. They want to take the time to cross every T, dot every I, be thorough, gather lots of data and evidence. Now maybe some hacks out there rush, but just in general that's what they do.

So when I read your saga, I think she was keeping it close to the vest. She reviewed the file, collected it with what she knew from her sessions, and it was obvious. And I think from your board posts it has been obvious and from your own heart (the fact that you pursued it, that your gut thought it), it was obvious. There's significant research data on the accuracy of parental gut, and your gut had already told you where this was going.

She would not have staked her professional reputation and written the report if she didn't feel she had the evidence to get there. But that doesn't make it easier. She had wanted you to come back, and frankly maybe you should just pay for an appointment and go talk it over. It would be the logical thing to do. Or have your insurance cover it out of network or whatever they can do. 

If you want it confirmed three times or seven times or 90 times over, that's FINE. God knows I did and others have. I mean, why do you think my kid has been through so many? We've done psychs, behaviorists, SLPs who specialize in social thinking and social communication deficits. Any time we've given them enough time and enough access and enough data, they've all gotten to autism. The ONLY person who screwed us was the first idiot neuropsych who used the GARS, old edition, nothing else, didn't do all the hours of evals himself, and had people submitting data who saw him in 20 minute chunks. Everybody after that who actually spent time with him and gathered data and wasn't related to a DONKEY agreed.

It's awfully hard getting that in a letter, not in a sit down appointment with a couch and private time to process. It's hard. So do what you would have done. Have a cry, go rant and say it's wrong, eat a pan of brownies or drink something strong, whatever it is you do. But I would pay for that appointment if you have to, just one hour, and have that conversation with her. It's the first eval you're doing, and there will be others. You won't get this wrong. 

Think about it. Did she recommend ABA or bringing in a behaviorist? That's what we did, and it was really a test like ok will someone else who knows autism and who sees him in a different location, with no prejudicing, really think he has autism? You'll just see. Don't ask idiots like a reading tutor or someone who isn't qualified. Don't even get me started on the idiots who think they know and can diagnose autism because they got the grad level ASD certificate. Argh. Anyways. But this is going to be confirmed over time. 

Also, and this is the reason you shouldn't bury it, what maybe seems kind of iffy or explainable to you will *probably* become more obvious with time. Like where my ds was kind of, well people made excuses (you talk for him, blah blah), there came a point where things shifted, maybe around age 8, and it went to where NO ONE had any doubts. The discrepancies were too obvious. And I don't remember the age of your ds, but he may be in that range where you still wonder and don't see the discrepancies so much. Professionals see them earlier, but that's why the average age of diagnosis for higher IQ kids is more like 9 or 10. Seriously.

I don't know about how it affects you in PA. PA homeschool law sucks, yes? Move to Ohio or some other utopia, mercy. Maybe go to Chat or Gen and ask about PA and how it will affect you? What services do you have access to? What is she recommending, and what support level did she go with? Early is better on this stuff.

Fwiw, even if you said well she's WRONG, it's ADHD+anxiety, blah blah, it still wouldn't matter. If she thinks there needs to be intervention, it needs to be done. Some of the interventions are the SAME whether it's ADHD+anxiety or ASD. They'll put those kids in the same groups, similar supports, similar strategies. It's not like there's this super big chasm. ADHD will merge right into ASD at the high end, so you're struggling over terms when the question is what interventions. If the label gets you insurance coverage and opens doors for interventions, you want it. I would just say, as someone whose kid gets a lot of labels thrown about, that the one they've really wanted to avoid is ODD. That's the label that people don't like and don't want to have to use. But ASD, if you can get over the grief part, it's really not that bad a label. If you're dealing with anyone under say 40 or 50, anyone educated, that label will open doors.

Word to the wise. You're going to need to talk, but talk to people who are SAFE. Like it's not always relatives, sigh. Maybe your relatives are, but maybe a particular friend. The board is pretty safe, because we'll just throw you virtual chocolate and sympathize. So talk but think through who you talk with, sigh.

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8 minutes ago, sbgrace said:

He smiled too much, he was too friendly, on and on.

Yup! People get so confused and this ASD means they aren't nice, aren't fun to be with, etc. My ds' therapists, if they're clicking, LOVE working with him! Like he actually has other music therapists coming up to his music therapist saying hey, next time you need a sub let me! LOL I think his SLPs for the most part like working with him. He's super bright, creative, and really amazing in his own ways. He also might harm you and needs significant support. But people LIKE him and find him charming and fun! Also, some people just like autism and have a big tolerance and an ability to be flexible and give, and some people not so much so. 

So definitely don't confuse the worth or joy of your child with the diagnosis. 

You know, a book that people are saying really helps them when they get the new diagnosis and need to read something sort of calm, normalizing is Uniquely Human: A Different Way of Seeing Autism by Barry Prizant. It's your classic from a big name in the autism community, and it might help you view him in a whole, healthy way. 

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1 hour ago, sbgrace said:

I agree that it seems as if she made that diagnosis based on the parent/teacher evaluations rather than what she saw.

 

Much of the diagnosis was based on the paperwork, but her comments about her observations all seemed to confirm what she was thinking. She spoke to his communication, eye contact, and ability to be flexible with choice of play. 

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1 hour ago, PeterPan said:

Did she recommend ABA or bringing in a behaviorist?

 Her recommendations included: continuing OT until such time as the OT determines he is no longer benefiting from what they offer (which we did - we were graduated from OT in August because they felt they could no longer provide meaningful services to him).

Whatever necessary services we can use to reduce his anxiety (OT, routine, structure, visual schedule).

For a mental health professional to continue to monitor his anxiety and provide further treatment if necessary.

Professional help for the potty training issues (which have been nearly resolved through dietary intervention, we will still have accidents at times, and right now we are in a regressive period of time).

A comprehensive speech and language evaluation including social pragmatic language.

An IEP if he ever is enrolled in the public school. (at about this point in the paperwork I started having trouble breathing...)

Any community support program available for children with autism/parent support groups.

and the final recommendation was an eval that includes the use of the Autism Diagnostic Observation Schedule to confirm the diagnosis.

That said, I was told by someone else that this is in fact an official diagnosis because the paper work includes the diagnosis list with ICD-10-CM codes listed next to each one.

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1 hour ago, PeterPan said:

And I don't remember the age of your ds, but he may be in that range where you still wonder and don't see the discrepancies so much.

 

He's 5, turns 6 in January. 

Honestly I knew he had autism when we went to go to that first appointment. The time and "anxiety" diagnosis and then the improvements in behavior seen through the dietary changes and OT intervention were just strong enough that I settled comfortably into this "he's got severe anxiety and some allergies to various artificial food additives." 

It brings into play the question of the "curability" of autism, which I know is a philosophical one, but at the same time, I see things that I KNOW are not neurotypical. 

We are having to structure his time and social interactions more than should be required of a neurtypical kid, I structure our calendar so we have a down day at home after any busy day where he interacts with others. He has periods of regression with sleeping in his bed/accidents during the day/etc. I have to manage his protein/carb intake carefully, limit his screen time dramatically, watch his total carb intake, ensure he gets enough sleep, and if not bail on plans or we will have melt-downs. So basically he's a "new kid" as my MIL told us (which is big for her, because she claimed he was a "normal boy" a year ago.), but much of that is because we manage his behavior through the environment. We still deal with the anxiety being a huge problem from day to day.

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Our insurance really wants the ADOS to be run.  They use that “confirming the diagnosis” wording, but it’s just a formality, a paperwork thing.  

Just for my opinion, but I think you and your husband have mental images for autism, and don’t think your child fits it.  Maybe it’s time to expand your mental image.  

The thing about autism is that as a label/definition, it’s just something that is agreed on by some psychologists, who think some traits make sense to fit together.  They think the current “spectrum” idea is what makes the most sense as a way to help people receive services and broadly understand things that are good to know to help and understand some people.

But it’s a concept that is agreed upon, it’s very possible to look at and say “well to me it would make more sense if it was done this other way instead.”  And maybe that way is just as good.  Maybe there is some practical consideration for psychologists that makes them think that is not as good. 

But it’s not like it’s a law or rule.  

The whole framework of “what is autism” ———- you and your husband and various other people can have your idea, but there is an “official” idea currently and so that is what is gone by “officially.”  But it doesn’t mean you have to agree on a personal level.  But for official purposes it is what it is.  

You might learn more about it and think there is more that fits, too.  Or you might not.  

But I think in a way it doesn’t mean that much to say autism, it’s just a thing to say that some people have noticed and agreed on.  But I find it very helpful because it is a way to group helpful information and it helps me to find good information, so I am glad it is something that exists.  

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1 hour ago, PeterPan said:

If the label gets you insurance coverage and opens doors for interventions, you want it. I would just say, as someone whose kid gets a lot of labels thrown about, that the one they've really wanted to avoid is ODD. That's the label that people don't like and don't want to have to use. But ASD, if you can get over the grief part, it's really not that bad a label. If you're dealing with anyone under say 40 or 50, anyone educated, that label will open doors.

Word to the wise. You're going to need to talk, but talk to people who are SAFE. Like it's not always relatives, sigh. Maybe your relatives are, but maybe a particular friend. The board is pretty safe, because we'll just throw you virtual chocolate and sympathize. So talk but think through who you talk with, sigh.

 

She addresses ODD in the paperwork, explaining why she DOESN"T think it fits him. Which I was thankful for. I have these torn emotions - on the one hand I felt like I was managing the behavior difficulties and now this "label" makes me feel wholly inadequate to continue to manage. but I know nothing changed from one day to another. I also feel like now I don't have to "do this alone" but I don't know what that means exactly.

And yes, my relatives are not safe to talk to. 

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It sounds like you are doing a great job providing supports!

That is good.  The only caveat is that it is good to have a perspective that he is doing so well because he has the supports.  At this moment in time, at least, he is benefiting from these supports, and he would not do as well without them. 

And that is a way it can work that it’s good to have a label, it can be how you find out about the good supports, that will really help.  

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No!  You are clearly providing good supports!  If you’re providing good supports now, I think starting out is the hardest part.  You may have tweaking and adding in the future, but no more starting from scratch!

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As far as “not going it alone,” it is really up to you how much you make of a diagnosis, mentally and with other choices you make.

I think it depends a lot on what you are comfortable with.

Then it depends on how much you have in common with other people, and how much your child has in common with other kids.  It can just depend.  

There’s not a certain box for you to fit in as a parent, though, or with parenting.  It’s really up to you.  You are allowed to have personal preferences the same as anyone else.  Some things you may need to go with “what works” and look for things that will work.  But you are allowed to have personal preferences within that, too, based on what you see working, what you know about your child, and just plain personal preferences.  

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1 hour ago, PeterPan said:

Yup! People get so confused and this ASD means they aren't nice, aren't fun to be with, etc. My ds' therapists, if they're clicking, LOVE working with him! Like he actually has other music therapists coming up to his music therapist saying hey, next time you need a sub let me! LOL I think his SLPs for the most part like working with him. He's super bright, creative, and really amazing in his own ways. He also might harm you and needs significant support. But people LIKE him and find him charming and fun! Also, some people just like autism and have a big tolerance and an ability to be flexible and give, and some people not so much so. 

So definitely don't confuse the worth or joy of your child with the diagnosis. 

You know, a book that people are saying really helps them when they get the new diagnosis and need to read something sort of calm, normalizing is Uniquely Human: A Different Way of Seeing Autism by Barry Prizant. It's your classic from a big name in the autism community, and it might help you view him in a whole, healthy way. 

This is interesting - I think this plays a huge part in people's inability to see some issues - surely nothing's wrong with this child because I like him! He's likable! Which if you think about it is kind of sad - a kid with a problem can be likable and still have a problem......guess a "visible" problem is more likely to have the same people feeling sorry for him instead? 

Thanks for the book recommendation. I'm also in the middle of the book Differently Wired by Deborah Reber. It speaks to me because my eldest has SPD, my next has Dyslexia and then there's my son...

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2 minutes ago, Lecka said:

As far as “not going it alone,” it is really up to you how much you make of a diagnosis, mentally and with other choices you make.

I think it depends a lot on what you are comfortable with.

Then it depends on how much you have in common with other people, and how much your child has in common with other kids.  It can just depend.  

 There’s not a certain box for you to fit in as a parent, though, or with parenting.  It’s really up to you.  You are allowed to have personal preferences the same as anyone else.  Some things you may need to go with “what works” and look for things that will work.  But you are allowed to have personal preferences within that, too, based on what you see working, what you know about your child, and just plain personal preferences.  

And this is how we've worked over the past few months to get to where we are today. We figured out, within our preferences, what works for us and our child. I think I was just really thrown by a diagnosis that I was not expecting at this point. Grief is really part of the process which I have read over and over and thought it wouldn't apply to me because I knew. But when I read the paperwork, I took a shower in the middle of the day so the kids wouldn't see me crying. It's frustrating too because my husband didn't even want to read the paperwork. But if nothing else the thorough history she included in the paperwork gives me a really good Ebenezer stone (forgive the biblical reference) to say look how far we've come, look where God has brought us. We still have a long way to go, but I feel kind of like my whole world shifted yesterday and I'm trying to get my feet on solid ground again now.

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I just wanted to let you know that you have some support, even though it may be more from online friends than from those you know in real life.

Getting an initial diagnosis can feel like a punch in the gut. We didn't get an ASD diagnosis, but got NVLD instead, when we had DS evaluated. The NVLD was unexpected, and I felt overwhelmed and did a lot of research to try to understand it, and for a brief time, I doubted it, because some of what I read about NVLD didn't seem to fit.

Over time, it became clear to me that the diagnosis is correct, although we still wonder about the ASD possibility.

So first of all, I want to say that some of what you feel right now, in the beginning, is shock and perhaps the stage of denial in the grief cycle. And that it is completely normal to go through that.

Secondly, you mentioned that the idea of an IEP set you back, in particular. I have two kids with IEPs, and I'll just share that they are a GOOD thing, not something to fear, though the process for getting an IEP can be challenging in some aspects for some people. I feared the IEP process myself, and I'm glad that we did it. So I'd encourage you to set aside that one thing for right now, not worry about it, and you can deal with it later, if needed. It can actually be really helpful to have the psych's recommendation for an IEP in writing, because to get the process rolling, there needs to be evidence that one is needed, and you now have that base covered.

Thirdly, coming from someone who has a son on the border of the spectrum but without the diagnosis, I will say that having that diagnosis would make many things easier, especially as we are moving into the teen years and staring down the barrel at adulthood. First, it may give you access to interventions while he is young, which can make a lifetime of difference. And when he is older, qualifying for job placement services and other resources will be much easier with the diagnosis on record.

I'm really sorry that it has hit you hard, and I don't like the way that you describe the psych's communication to you. It's understandable that you are upset and feel blindsided. But I think you may find that having the autism documented will be helpful in the end. Remember, using that word does not change who your son is; it just helps people understand him and his needs better.

((hugs))

 

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2 hours ago, mamashark said:

 Her recommendations included: continuing OT until such time as the OT determines he is no longer benefiting from what they offer (which we did - we were graduated from OT in August because they felt they could no longer provide meaningful services to him).

Whatever necessary services we can use to reduce his anxiety (OT, routine, structure, visual schedule).

For a mental health professional to continue to monitor his anxiety and provide further treatment if necessary.

Professional help for the potty training issues (which have been nearly resolved through dietary intervention, we will still have accidents at times, and right now we are in a regressive period of time).

A comprehensive speech and language evaluation including social pragmatic language.

An IEP if he ever is enrolled in the public school. (at about this point in the paperwork I started having trouble breathing...)

Any community support program available for children with autism/parent support groups.

and the final recommendation was an eval that includes the use of the Autism Diagnostic Observation Schedule to confirm the diagnosis.

That said, I was told by someone else that this is in fact an official diagnosis because the paper work includes the diagnosis list with ICD-10-CM codes listed next to each one.

That all seems pretty fair. We didn't have the ADOS done the first few times on my ds, and I can tell you it was fascinating to finally have it done. 

And did she mark a support level? 

On the OT, these people have limits so it can be good to move on to another. There's SO much more they can be doing for him, that if they graduated him it only means they're maxed out with their knowledge, not that what can be done is maxed out.

If it makes you feel better, our ps won't even give an IEP for ASD1. You might qualify under something else, but with ASD1 the assumption (incorrect but what they do here) is that they mainstream and don't require services to access their education. So it's not like all kids have the same outcome. My ds has a very thick IEP and we fought really hard for that, but it's what fits him. Some kids really do mainstream and just need some services on the side to get by.

Fwiw, he's going to reflect everything you put into him. To my mind there's never too much, never too much social thinking, never too much work on growing him. We have so much good stuff now that it's a great time to be doing this play-based social thinking intervention, RDI, etc.

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2 hours ago, mamashark said:

 

He's 5, turns 6 in January. 

Honestly I knew he had autism when we went to go to that first appointment. The time and "anxiety" diagnosis and then the improvements in behavior seen through the dietary changes and OT intervention were just strong enough that I settled comfortably into this "he's got severe anxiety and some allergies to various artificial food additives." 

It brings into play the question of the "curability" of autism, which I know is a philosophical one, but at the same time, I see things that I KNOW are not neurotypical. 

We are having to structure his time and social interactions more than should be required of a neurtypical kid, I structure our calendar so we have a down day at home after any busy day where he interacts with others. He has periods of regression with sleeping in his bed/accidents during the day/etc. I have to manage his protein/carb intake carefully, limit his screen time dramatically, watch his total carb intake, ensure he gets enough sleep, and if not bail on plans or we will have melt-downs. So basically he's a "new kid" as my MIL told us (which is big for her, because she claimed he was a "normal boy" a year ago.), but much of that is because we manage his behavior through the environment. We still deal with the anxiety being a huge problem from day to day.

That's a lot of support. My ds was not dry very consistently till around 8, and he had at least one accident on our recent vacation. 

What you're describing is stuff you want to continue OT for or get a behaviorist for. Actually both would be good. There's this sort of bias against ABA for kids with higher IQ, but I can tell you that bringing in a behaviorist was HUGE for us. It can take some work to find someone good with homeschoolers, experienced with the IQ of your dc, etc., but it could be really good with the right person. 

I don't think people mean the same thing as I would when they say "curability". We just aren't gonna mean the same thing. If you go run the genes and he has it, then it ain't going away. And since you didn't cause it but can make it WORSE, it totally makes sense to take all the steps you're taking to take care of him. Yes, dealing with candida, level of demands, stress, exposure to dairy, etc. etc. helps, absolutely. 

My ds is so lovely sometimes that people NEVER IMAGINE how challenging he can be on a dime. Actually, he did that on our last playdate. We had had a bunch of great playdates and the mom was like wow I can't believe all these things you say about him doing xyz. Then something happened and BOOM it was bad. They sorta haven't called us back, hmm. Now we all got busy with school too. I'm just saying that's how it can be. Or, as I told my dh, if someone is gonna blame me for his problems, make sure you blame me for his SUCCESSES too! He has both, and I think you can take big credit for his gains as those came from lots of hard work and research on your part. 

The challenge with gains is you then realize they have to transfer over to him or require support to continue. And that's when you realize it's autism.

Fwiw he might qualify with your county board of disabilities. My ds does, and it gets us a small stipend and opens a few doors. Gets us a massive discount at the Y. 

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2 hours ago, mamashark said:

I also feel like now I don't have to "do this alone" but I don't know what that means exactly.

If you don't want to do it alone, get a behaviorist. You'll need to shop around and be careful. Ours is not a BCBA but was in the field before that and never got it done. BCBA may be bringing in lots of approaches or may be sort of strict ABA/Lovass/DTT. My ds doesn't need DTT, but he needs methods INSPIRED by DTT. He needs that same level of careful support, and he actually had some holes that took us a while to figure out and go back and patch that are normal things to work on with ABA started at the age your ds is.

I can tell you that, for us, it didn't do us a good service to skip ABA. People assumed ds didn't need the VBMAPP and didn't need to go through those skills, and he DID. Now there are lots of ways to do them, but he actually needed to go through the skills. So if you find the right person, it could really be worth your while.

 

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2 hours ago, mamashark said:

guess a "visible" problem is more likely to have the same people feeling sorry for him instead? 

Don't even get me started. A high IQ kid with ASD can be really obnoxious and after a certain age people just make certain assumptions and get nasty about it. He's verbal, he's handsome, he's smart, so WHY WON'T HE JUST SHUT UP AND GO ALONG??? I'm gonna rant here, because it's beyond ugly. And people with Down's kids don't get treated that way (from my observation), and some profiles of ASD are just kinda laidback and able to comply and do things. Our behaviorist says the high IQ ones are the HARDEST.

Whatever happens happens, but yeah you're not crazy. Burns me up that people find it easy to be kind to some kid with Downs or ID but won't try with my ds. They try one time, and my ds just needs a lot more times. Lots more. But his potential for interaction is SO HIGH if you actually make that effort! But getting anyone to take the time to make that effort is hard. People want the immediate reinforcement they get with kids who can make eye contact, who will respond when you say their name, who understand a joke, who will give a high 5. I watch the Downs kids at church do all that, so it's so obvious why someone would find it reinforcing to interact with them! But my ds is going to ignore you, not respond to your high 5, and only offer to let you look at his tank apps and maybe start kicking. Not exactly reinforcing. And then they're thinking you're a bad parent because those things are happening. I get pretty weary of it, very weary.

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2 hours ago, mamashark said:

But when I read the paperwork, I took a shower in the middle of the day so the kids wouldn't see me crying. It's frustrating too because my husband didn't even want to read the paperwork.

This is the right thing to do. As far as your dh, is he on the spectrum or kissing the spectrum? 

 

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2 hours ago, mamashark said:

I feel kind of like my whole world shifted yesterday

It did. And when I first said the A word in public, that was really hard too. But you'll get there. Have you read the poem Welcome to Holland? When you have time to cry, it's a good one.

 

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As far as the anxiety/ autism question....we're there with you.  Honestly, we're in a weird space where we've had a couple big evaluations with the ADOS, one of which the psychologist thought was a boom, confirming the done deal diagnosis, and both of them said no, she's not autistic, even though we have tons of autism symptoms.  I'd really like to see what someone who really gets high IQ girls and autism says, honestly, because the ADOS hits all these things that she's GREAT at.  I mean, one on one attention, pretend play, conversation with an adult, no pressure....she eats that stuff up and practically glows.  So the pediatric psychiatrist has autism on her record, because she's like, "Uh, yeah."  Her counseling psychologist says she hits all the diagnosis categories.  But she passes the official tests with flying colors.  And for us, the thing is, the more anxious she is, the more autistic she looks.  She's 13 now, and while she has an IEP in public school, it's because she can't spell (dyslexia) and was having panic attacks about her locker.  The only services we have is not to count off for spelling in daily work and she does homeroom in the special ed room (because it's a calm way to start off her day), with designated teachers to go to to help her if she can't get into her locker.  She takes meds for anxiety, and the dramatic difference when we started meds at five was SUPER DRAMATIC.  I knew it was bad, but I hadn't realized how much everything was affected by the anxiety.  Learning disabilities.....she started learning after basically standing still from ages 2-5 skill wise once we started meds.  Autism symptoms?  Started interacting with kids at preschool and talking to people.  Sleep got better.  Behavior got radically better.  It was the best parenting decision we ever made.  She was really pretty nonfunctional with meds, and that SSRI was like magic.  Now.....LONG family history, both sides, with severe anxiety.  So, she came by it honestly.  And even at 13, when her anxiety gets worse, she looks a little weirder.  But, she's totally functional now.  Delightful.  Does well in school academically.  Is involved in extracurricular activities.  Has genuine reciprocal friendships.  She stands up for other kids who are being picked on by mean kids at school.  So while I sorta wonder about whether or not she has autism, at this point in her life it doesn't really matter all that much.  It might down the line; I don't know.  But she's a heck of a lot more functional than I thought she might be when she was five.  

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52 minutes ago, PeterPan said:

That all seems pretty fair. We didn't have the ADOS done the first few times on my ds, and I can tell you it was fascinating to finally have it done. 

And did she mark a support level? 

On the OT, these people have limits so it can be good to move on to another. There's SO much more they can be doing for him, that if they graduated him it only means they're maxed out with their knowledge, not that what can be done is maxed out.

If it makes you feel better, our ps won't even give an IEP for ASD1. You might qualify under something else, but with ASD1 the assumption (incorrect but what they do here) is that they mainstream and don't require services to access their education. So it's not like all kids have the same outcome. My ds has a very thick IEP and we fought really hard for that, but it's what fits him. Some kids really do mainstream and just need some services on the side to get by.

Fwiw, he's going to reflect everything you put into him. To my mind there's never too much, never too much social thinking, never too much work on growing him. We have so much good stuff now that it's a great time to be doing this play-based social thinking intervention, RDI, etc.

 

She did not mark a support level. She didn't even label it asd1 (I don't know what that means without lookin it up). She just diagnosed Autistic Spectrum disorder, F84.0 

 

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37 minutes ago, PeterPan said:

This is the right thing to do. As far as your dh, is he on the spectrum or kissing the spectrum? 

 

No, my husband doesn't kiss the spectrum in my opinion. I think he's more likely ADHD. I can see more tendencies in myself to lean towards the spectrum, but I've always figured it was more giftedness than spectrum for myself - I tend to think differently, and have to be careful how I present myself to most people. 

Off topic - we recently had a creation summit at our church and in our small group our pastor (whose family are members of our group) read aloud the question that I had submitted, because he thought it was a good one to discuss only there hadn't been time during the summit at church. After he finished reading my question the rest of the adults in the group turned and looked at me kind of stunned... My comment was "well, now everyone knows how I think." But at least we had a good discussion after that! 

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15 minutes ago, Terabith said:

As far as the anxiety/ autism question....we're there with you.  Honestly, we're in a weird space where we've had a couple big evaluations with the ADOS, one of which the psychologist thought was a boom, confirming the done deal diagnosis, and both of them said no, she's not autistic, even though we have tons of autism symptoms.  I'd really like to see what someone who really gets high IQ girls and autism says, honestly, because the ADOS hits all these things that she's GREAT at.  I mean, one on one attention, pretend play, conversation with an adult, no pressure....she eats that stuff up and practically glows.  So the pediatric psychiatrist has autism on her record, because she's like, "Uh, yeah."  Her counseling psychologist says she hits all the diagnosis categories.  But she passes the official tests with flying colors.  And for us, the thing is, the more anxious she is, the more autistic she looks.  She's 13 now, and while she has an IEP in public school, it's because she can't spell (dyslexia) and was having panic attacks about her locker.  The only services we have is not to count off for spelling in daily work and she does homeroom in the special ed room (because it's a calm way to start off her day), with designated teachers to go to to help her if she can't get into her locker.  She takes meds for anxiety, and the dramatic difference when we started meds at five was SUPER DRAMATIC.  I knew it was bad, but I hadn't realized how much everything was affected by the anxiety.  Learning disabilities.....she started learning after basically standing still from ages 2-5 skill wise once we started meds.  Autism symptoms?  Started interacting with kids at preschool and talking to people.  Sleep got better.  Behavior got radically better.  It was the best parenting decision we ever made.  She was really pretty nonfunctional with meds, and that SSRI was like magic.  Now.....LONG family history, both sides, with severe anxiety.  So, she came by it honestly.  And even at 13, when her anxiety gets worse, she looks a little weirder.  But, she's totally functional now.  Delightful.  Does well in school academically.  Is involved in extracurricular activities.  Has genuine reciprocal friendships.  She stands up for other kids who are being picked on by mean kids at school.  So while I sorta wonder about whether or not she has autism, at this point in her life it doesn't really matter all that much.  It might down the line; I don't know.  But she's a heck of a lot more functional than I thought she might be when she was five.  

 This is fascinating to me, because this is what I was assuming we were dealing with. We were given an anxiety disorder diagnosis multiple times before this evaluation report came in the mail, and the idea of an SSRI really kind of bothers me for him, but it's something that I might look into down the road a little bit. I sat in his wed. night class watching him and taking notes the first week that it started back up this fall, and to the other adults in the room he was the perfect kid - quiet, didn't do anything wrong. But I could tell he was absolutely scared to death. He scanned the room constantly, didn't speak to the kid next to him no matter how hard that kid tried to get him to talk, did whatever the teacher told him to without hesitation, but mechanically. He didn't speak because I think he couldn't speak. He looked to be sure I was there a million times. And yes - the autistic looking symptoms come out really strong when he's overly anxious. 

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24 minutes ago, Terabith said:

As far as the anxiety/ autism question....we're there with you.  Honestly, we're in a weird space where we've had a couple big evaluations with the ADOS, one of which the psychologist thought was a boom, confirming the done deal diagnosis, and both of them said no, she's not autistic, even though we have tons of autism symptoms.  I'd really like to see what someone who really gets high IQ girls and autism says, honestly, because the ADOS hits all these things that she's GREAT at.  I mean, one on one attention, pretend play, conversation with an adult, no pressure....she eats that stuff up and practically glows.  So the pediatric psychiatrist has autism on her record, because she's like, "Uh, yeah."  Her counseling psychologist says she hits all the diagnosis categories.  But she passes the official tests with flying colors.  And for us, the thing is, the more anxious she is, the more autistic she looks.  She's 13 now, and while she has an IEP in public school, it's because she can't spell (dyslexia) and was having panic attacks about her locker.  The only services we have is not to count off for spelling in daily work and she does homeroom in the special ed room (because it's a calm way to start off her day), with designated teachers to go to to help her if she can't get into her locker.  She takes meds for anxiety, and the dramatic difference when we started meds at five was SUPER DRAMATIC.  I knew it was bad, but I hadn't realized how much everything was affected by the anxiety.  Learning disabilities.....she started learning after basically standing still from ages 2-5 skill wise once we started meds.  Autism symptoms?  Started interacting with kids at preschool and talking to people.  Sleep got better.  Behavior got radically better.  It was the best parenting decision we ever made.  She was really pretty nonfunctional with meds, and that SSRI was like magic.  Now.....LONG family history, both sides, with severe anxiety.  So, she came by it honestly.  And even at 13, when her anxiety gets worse, she looks a little weirder.  But, she's totally functional now.  Delightful.  Does well in school academically.  Is involved in extracurricular activities.  Has genuine reciprocal friendships.  She stands up for other kids who are being picked on by mean kids at school.  So while I sorta wonder about whether or not she has autism, at this point in her life it doesn't really matter all that much.  It might down the line; I don't know.  But she's a heck of a lot more functional than I thought she might be when she was five.  

 

The ADOS and High IQ girls is so frustrating.  It’s supposed to be the gold standard test, and yet it completely fails to support this group.  I’m autistic.  I *loved* one on one imaginary play with a grown-up.  Dazzling grown-ups (in safe, comfortable environments) was my super-power.  Put me on the playground?  In a noisy classroom?  With peers?  Pffft.

For OP, you know your son is autistic.  In the long run, a correct diagnosis is something to celebrate.  The long run.  Not today, not next week, but someday.  For now, it’s okay to accept feeling off-balance.  It’s a big deal, even when it confirms what you already knew.  

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We could give up on the DSM and use something actually based in reality like genes, but I guess that would be too novel.

The ADOS was never meant to override psych discretion, and a very knowledgeable psych won't let it.

It's normal to have some discrepancy between how they look in their most familiar, comfortable environments, and how they appear somewhere more stressful, with higher demands and less support. That's actually part of the point, that they need that support.

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1 minute ago, PeterPan said:

We could give up on the DSM and use something actually based in reality like genes, but I guess that would be too novel.

The ADOS was never meant to override psych discretion, and a very knowledgeable psych won't let it.

It's normal to have some discrepancy between how they look in their most familiar, comfortable environments, and how they appear somewhere more stressful, with higher demands and less support. That's actually part of the point, that they need that support.

This makes sense.

And - the interesting thing to me is that both the psych who diagnosed him and my own psych when I briefed her on the story a couple weeks ago (guess I have an update for her now) urged me to find a support group for me. The kids need support and so do the parents.

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I've never been to an ASD support group. I know there's one near us and another farther run by a psych and some probably in the big city. I guess I'm showing my own social tendencies, if I don't know why I'd go hang with someone to talk about it, lol. 

I made friends at one of the therapy centers, and that was amazing. There's a lot of breadth (hence the SPECTRUM term), so sometimes kids with maybe an ADHD label instead of ASD can make really good playmates for my ds. They have skills to deal with him a bit better. Now he enjoys playing with ASD kids too, but they have less reserve. And personally, I don't know. I really enjoy ASD kids, but I'm not sure if I enjoy ASD adults. There's just a lot of breadth. I just think it's sort of biased, like saying all blind people have to hang together or all people in wheelchairs have to hang together or something. Hang with the people you like hanging with.

When I need actual support, I use the behaviorist. She gets $100 an hour to keep track of every detail of our situations and give me insights. NOBODY else has enough data to give me her level of feedback and insight. I make the EFFORT to build that relationship, because by being open there and building that I've got a resource who can see patterns and help me work through things I couldn't figure out on my own. And she's not on the spectrum, sorry. She's NT and she's probably got a gifted IQ and she's a licensed social worker to boot. She thinks through things like a hawk and can help me solve radical emergencies and head off disasters. Everyone else can fade away in comparison. Everyone else I keep at kind of acquaintance level. We gab, we problem solve this or that, but her I let in all the way.

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2 hours ago, mamashark said:

 This is fascinating to me, because this is what I was assuming we were dealing with. We were given an anxiety disorder diagnosis multiple times before this evaluation report came in the mail, and the idea of an SSRI really kind of bothers me for him, but it's something that I might look into down the road a little bit. I sat in his wed. night class watching him and taking notes the first week that it started back up this fall, and to the other adults in the room he was the perfect kid - quiet, didn't do anything wrong. But I could tell he was absolutely scared to death. He scanned the room constantly, didn't speak to the kid next to him no matter how hard that kid tried to get him to talk, did whatever the teacher told him to without hesitation, but mechanically. He didn't speak because I think he couldn't speak. He looked to be sure I was there a million times. And yes - the autistic looking symptoms come out really strong when he's overly anxious. 

Yeah, I was working in the preschool Catherine attended when she was 3-5.  She had the same teacher for two years when 4-5; we held her back for kindergarten.  So I was THERE, and I had her in music class, and I walked by the room frequently, and I could see how she wasn't interacting with other kids, was hiding, was mentally in her own world at circle time.  But the teacher honestly didn't see a problem.  She kept saying she was fine, and this is a REALLY good teacher.  She just didn't have the training to know what to look for.  When we did the autism eval at five, the person who came and observed saw the issues loud and clear, which is why when we did the ADOS, the psych thought he was rubber stamping an ASD diagnosis.  So it was all subtle.  She looked like she was quiet and well behaved, when really she was in her own world and not interacting with other kids, but she was polite and subtle about it.  I really encourage you to look at treating the anxiety aggressively for a period of time and see if it makes a difference.  I was petrified of meds, because we have a family history of bipolar, and I was worried about tripping that switch, but finally I just decided we needed to try it and see what happened, and I'm so glad we did.  And I'm sure there are other ways to treat it, with supplements and counseling and such.  But we weren't getting anywhere with counseling until we had meds on board.  I just think there's a lot more overlap between ASD and anxiety than is frequently evident.  

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2 hours ago, PeterPan said:

We could give up on the DSM and use something actually based in reality like genes, but I guess that would be too novel.

 

I've been reading books written by autistic people lately. Oddly enough, they seem to know themselves better than the DSM does. Who'd have thought? ?

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7 hours ago, mamashark said:

A comprehensive speech and language evaluation including social pragmatic language.

An IEP if he ever is enrolled in the public school. (at about this point in the paperwork I started having trouble breathing...)

Any community support program available for children with autism/parent support groups.

 

I can't speak to all of your concerns, but I think you are doing a good job of supporting your son, and you don't have to do it alone.

I am all for support groups, but you have to be ready, and you have to be willing to see commonalities and not just how your kid is different. Sometimes this means finding the "right" group, and sometimes it means, mining what they say for what applies to you. You also want a group with a positive vibe--people can be real, but it doesn't stay negative all the time. My son is 2e, and he is on the spectrum by the skin of his teeth in some regards, but he has lots of language trouble. The issues are rather compartmentalized, so they aren't super apparent until you bring out the right conditions, but the tasks that are affected by his language troubles are entrenched. Obviously, I am going to recommend the additional language testing with someone who is good at autism language issues. Learn about what they are looking for, and then watch for potential ways he struggles with those things even past the testing--those areas might be places he's "okay" now but stagnates without intervention. If so, they'll show up later as well. We liked the TONL and the TOPS testing. Some of the social stuff is "too easy" at your son's age but will be evident later on if it's not now.

The IEP thing can be scary as a process, but it can be really helpful. 

I love your ebenezer stone thinking, btw. You will want to gather more stones along the way, and you will have good things to reflect on later as you go through this journey! 

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6 hours ago, nwahomeschoolmom said:

With my son, I can literally see his behavior change on different probiotics.  We had to switch back to another one again, and certain behaviors are helped more on this one, and vice versa.  I had really gotten used to him on his last probiotic but they changed the flavor and now he refuses it!  The probiotic he is back on now has been better for tics, but worse for impulsivity.

can you share, if you feel comfortable doing so, what probiotics were specifically helpful for your sons tics? my 7 year old daughter has developed a couple of motor tics and we are trying a few things with her with limited success. Right now the only thing that touches them is 3000 mg of omega 3 daily. On that dose, the tics are minimal - not gone, but dramatically reduced. 

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On 10/2/2018 at 11:35 PM, nwahomeschoolmom said:

Not that I know very much, but this sounds like a great explanation for the surprise of the diagnosis in the mail.  I'm slightly envious....my son sounds about as on the spectrum as yours ("quirky") but we just got a severe ADHD diagnosis. ( Having a diagnosis of any kind has been very helpful in connecting with friends for him though....)

.....

For what its worth, my son also has a big improvement in behavior due to probiotics and diet, but the underlying conditions are still there.  I'm sure there are aspects of thinking that will be affected by autism/ADHD even if some of the more troubling ones are leveled out by diet, etc.  With my son, I can literally see his behavior change on different probiotics.  We had to switch back to another one again, and certain behaviors are helped more on this one, and vice versa.  I had really gotten used to him on his last probiotic but they changed the flavor and now he refuses it!  The probiotic he is back on now has been better for tics, but worse for impulsivity.

Just thought I'd share a bit about my own similar son - Good luck moving forward with everything!

 

I talked to my psychologist about the whole thing and her opinion is that I misunderstood the phone conversation where my son's psych wanted us to come in to discuss Autism. She said that was code for "I'm changing the diagnosis, please come in to discuss it" and I misunderstood that. Now, my psychologist was appalled that it then took her 4 months to get us the report, she finds that terribly unprofessional and unhelpful, but she also knows of the office and dislikes them as a group. so there's that. Otherwise, my psychologist verified that the document is valid, the diagnosis is sound, and that we can and should move forward with it to find services for my son.

Last night was really really hard on me - it was the first "social" thing we've done since getting the paperwork. We went to wed. night church and this is the hardest class we ask my son to participate in. He's one of about a dozen kids and they are in a small room and there are a couple boys who have difficulty obeying in the class. I just kept looking at all the kids feeling like it was totally unfair. 

A big part of me wanted to just call his primary care dr. and ask for an SSRI. Then I can ignore the entire autism thing and move on with life. The thing is, our dr. has a policy that if you get an SSRI you agree to go to counseling too. If she were to put that requirement on him, we'd have to put him in speech therapy too for the pragmatic language stuff (which I'm working on getting into anyway) and that still wouldn't resolve the other autism pieces that I know are there. I'd rather spend time with a behaviorist than a counselor when I KNOW he can't discuss feelings/emotions right now. He can't even tolerate "guided meditation for kids". My psychologist gave me the idea of having him do a cooperative awareness activity that brings his focus to what he is able to notice around him without looking at feelings and it is the only thing that has worked for helping calm him when in a situation where we are allowed to talk aloud. 

Yesterday my mom was over (and I know she disagrees with the diagnosis, so we didn't talk about it). She watched him taking apart his magic track (you know the track for cars that has all the little pieces that hook together?). He meticulously took apart every piece, sorted them by color into piles, then reassembled them into sections by color. He got stuck at one point because one section was longer than the others, but finally was able to get the track together in a way that he was satisfied, and begin playing with cars on it. My mom joked about how kids are able to do the most repetitive and obsessive looking tasks without seeming bored and how do I think they do that? Is it a developmental thing? I looked at her, but couldn't answer. 

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I'm sorry you had a tough day. I think your counselor may be right about the misunderstanding. Although that was unfortunate, it's not something that is likely to happen again, thank goodness.

I think it is a good idea to discuss the new information with the primary care doctor, when you have the chance. I'm guessing you may have been just venting when you said that you wished you could put him on a med that would allow you to ignore the autism. There may be some pieces that can be addressed with meds, if anxiety and/or ADHD are part of the issues. And they may very well be -- did you get those diagnoses, as well? And the doctor should be able to help you sort it out. But as you mention, there are many facets to autism, and medication won't address the global issues.

About speech therapy for social skills -- I highly recommend it, and I hope that you can find a good place to pursue it. Your child is still very young, but social skills in large part determine employability, so it can be an extremely important aspect to work on. And one that can respond to therapy. Plus, if you ever do pursue an IEP, you should know that it can be part of the educational plan addressed by the school, as well.

I'm sorry you can't talk to your mom and that church was hard. We want church to be a helpful place when we are facing difficulties, and it should be! But there were also times in our journey where participating was just another difficult thing to manage, and I felt that others couldn't understand. Some churches are better than others at helping families with special needs; when you feel up to it, it might help to talk to one of the pastors or someone in the children's ministry to make sure they understand your son's needs and also to see if there are resources available that you may not yet know about. Some churches are just horrible at addressing these things, but others can be good and want to help.

ETA: When we had some hurdles at church, I didn't speak up or ask for help, and I should have. I was tired and overwhelmed, and I just felt that they were things that were my responsibility to handle, and that I shouldn't ask for the way things were done to be changed to suit me, and so on. So I ended up dropping out of the Bible study that was the issue, instead of talking to the leader. In hindsight, I should have talked to her. She actually reached out to me, and even then I couldn't bring myself to tell her fully what the issues were. I wish I had.

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If your son needs an SSRI and cannot do traditional therapy, perhaps an autism diagnosis would move your pediatrician to Rx it anyway on the condition that you do something that is appropriate for your son. 

You also really want your son assessed for services before you do tons of therapy. So if you are considering something like a county board of DD (however it's handled in your area), you want that assessment sooner than later. Don't put off therapy, but do try to get your son whatever assessments he needs asap if the psychologist and others think he'll qualify. Sometimes things like anxiety (mental health) plus autism (developmental diagnosis) change the calculations they use to figure out services--they also look at life skills and all kinds of things.

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That's really good that your new psych was able to explain what the previous psych had been thinking. And even though it's really rough that she confirmed it, at least it's done, off the table as being the question, and you can move on through the stages of grief and action.

Is there a reason these therapies are either/or for you? Your dc will enjoy ALL the interactions you can give him and eat up ALL the high quality interventions you can provide. If your insurance will pay for it, stack and do more, sure. Like our behaviorist comes to our home and helps me by text/email. That's never inconvenient. The OT, SLP, counseling (psych in our case), etc., I stack with one trip into the big city. Sometimes you can find a place with multiple services under one roof, boom.

Now, SLPs for social. Now my ds is support level 2 for his autism and would not mainstream per his IEP. He would be in an ED classroom and he's pretty challenging to work with. The SLPs in the social groups were not really ready to handle him, even when they physically had enough people in the room. He got some benefit, yes!!! He learned people are not trees. You can laugh, but that's how someone from here put it when she saw him, and she was right. Just being in that situation helped him pick up the cluephone on things. It was a good stage for us. But SLPs aren't really ready to address the long-term, deeper issues.

53 minutes ago, mamashark said:

He can't even tolerate "guided meditation for kids". My psychologist gave me the idea of having him do a cooperative awareness activity that brings his focus to what he is able to notice around him without looking at feelings and it is the only thing that has worked for helping calm him when in a situation where we are allowed to talk aloud. 

He sounds like he needs to work with a behaviorist first and an OT before he's going to be ready to do so much with language and cognitive. They're going to need to get his body calmed down, get his STRESS down. You should do things to reduce stress. Yes, a behaviorist would be immensely helpful to you. The SLPs are going to be sometimes the least helpful. They vary, but they're not trained to look at the body. Some naturally do, just because they have that skill, but just in general they're ignoring the body and not as intune as they need to be. And you're correct that if a person is stressed and not calm they're not ready to have these other discussions. When you're ready, you can go read my post on interoception in the other thread. :smile:

56 minutes ago, mamashark said:

A big part of me wanted to just call his primary care dr. and ask for an SSRI

Maybe you'd like to build a team and let that be based on the advice of the team? Like I'm totally, totally not opposed to interventions. I have my ds on stuff for anxiety (5HTP, magnesium, etc.) and have run genetics. Medications can make it easier for the dc to receive the good instruction they're trying to give, yes!!! But sometimes what they want to do is say ok, how far can we get before that. And sometimes they're like no, this is not safe, this is not working. Just the fact that someone has anxiety doesn't mean the meds are the solution, because at some point we want all the other things that are the part of the solution too. We're not going to be able to medicate it and make it go away. It's going to be a multi-factored approach. So maybe, since your diagnosis is new, build the team, get a behaviorist, and maybe talk with your behaviorist and psych and say how can we approach this, what to try first, when to decide it's time to bring in meds, think about running genetics or pursuing biomedical, etc. 

59 minutes ago, mamashark said:

I KNOW he can't discuss feelings/emotions right now.

Our behaviorist, the psych, etc. are VERY CAREFUL with how they approach this with my ds. Let's see what your ds' support level comes out as, kwim? For my ds, that's part of why it's level 2 and significant support. My ds needs significant support to be able to stay calm and not go red zone during or shortly after hard conversations like that. The OT or behaviorist or psych is actually going to be bringing in SIGNIFICANT SUPPORT to do that safely. Notice I left of SLPs from that list. The SLPs were idiots on this, sorry. They were the ones who were like oh we know Zones, we work in the schools, we can do this!! And they were the ones my ds was LEAST SAFE with. We had major incidents with him going red zone, having dangerous episodes afterward, etc., because SLPs are NOT QUALIFIED to help kids stay green zone who need significant support, sorry. Oh they can say they are, but they aren't being tuned to the body. Their whole brain is trained for language, language. It's very hard to multi-task and do BOTH and keep my ds safe. My ds can have those same conversations with the behaviorist, with a psych, with an OT and be safe, but not (typically) with the SLPs.

So build a team, take your time, try stuff. You don't have to do it alone. Is the psych going to run the ADOS or generate some paper trail with a support level? I think for your own sake having the support level defined would be helpful. And yeah, it sounds like for your mother some of these behaviors are normal, that she hasn't seen the difference from typical kids enough to realize it's discrepant. That's ok too. If she accepts your dc and enjoys him and plays with him and they have a good time together, it's all good. If later you have a particular skill you're targeting (like being able to say he's tired or wants a break or needs to go to the bathroom), that might be something quantifiable she'll enjoy noticing when she's with him. I have a relative like that who is good for ds to play with and she just notices the things he's doing better at when I explain what we're working on. 

Well it's rough because it's all new, sigh. And it's hard going out when you first get the labels, because you're sorta like the Scarlet Letter and think everyone sees this RED A on your front... But it's going to fade and normalize. You'll get there. The weekend is coming up. Make good choices and come at it fresh. Did your psych like the idea of getting a behaviorist? Did she have suggestions on what you ought to do?

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My daughter got significant benefit from play therapy.  She’s never been willing to do a lot of talk stuff, but someone with sand tray stuff and lots of little figures, she worked through a lot of stuff.  

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16 minutes ago, kbutton said:

something like a county board of DD

Yes, once you have official paper trail, you can contact them. They'll probably have funding and connections and services. We get a really nice Y discount, which was how I was able to do so much with swim lessons, etc. Some counties have significant funding available and some, like mine, are more limited. But it's still worth a try. My ds has quite a few areas that affect daily living, so he hits 3 of the 6 categories they look at and continues to qualify. It's easier to qualify when your dc is younger, so you might qualify for a few years and then not make the cutoff the next time around when they re-eval. Ours does intake then ages 10 and 16. My ds qualified for his age 10 re-eval, sigh. It was sad, because nobody is like oh yeah lets go qualify with the county board of disabilities, sigh. But we do it. I don't know where things are going, so the responsible thing (in our case) was to keep that relationship and have those resources.

1 hour ago, mamashark said:

Last night was really really hard on me - it was the first "social" thing we've done since getting the paperwork. We went to wed. night church and this is the hardest class we ask my son to participate in. He's one of about a dozen kids and they are in a small room and there are a couple boys who have difficulty obeying in the class. I just kept looking at all the kids feeling like it was totally unfair. 

It sounds like you're going to be doing a lot of thinking! Some things are really hard to solve, and it's stuff to talk through with the behaviorist. The psych will be like oh well here's a strategy so he can solve his problem. The behaviorist can be more global and look at how that event is affecting his whole day, the next day, whether it's worth it, whether more options ought to be on the table. I need that global perspective and kind of help. I need help to reframe things sometimes and go ok this is the situation, this is what we could accomplish here if we made THIS thing our goal. Like maybe it's worth it if you know what skill you're targeting and why you're there. Just surviving is really stressful, but having skill goals and knowing ok this is our plan and why we're doing this, that can work.

Very few people are committed to getting into the soul of the seriously challenged. It's not like just being there automatically confers faith or trust or confidence or peace or calm. It's something I've struggled to win at, what can my ds connect with. We've done different things at different times. I WISH he had more emotional connection with someone, ANYONE at the church and I wish SOMEONE had the guts and hutspah to try to make that happen. We could solve so much if someone would bother. And then it's like ok if there's not that relationship (and if support always flows from relationship), then is this working, in the long-term will this work, can this be a choice he's going to continue to make and feel good about or is it just all stress... Your dc is young. Mine is almost 10 and approach those teen years. He can pretty much just reject NOW, and he's physically strong enough that you can no longer compel him. It makes it seem really different when you go ok church is always about sitting in a room listening to language you don't understand, being stressed, and being with people who don't care about you enough to bother to connect with you. Seems real logical to be there, eh?

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1 minute ago, Terabith said:

My daughter got significant benefit from play therapy.  She’s never been willing to do a lot of talk stuff, but someone with sand tray stuff and lots of little figures, she worked through a lot of stuff.  

Yes, yes, yes!!!!!! Our behaviorist does a LOT of play with ds, mostly play. They'll play 40 minutes and then do maybe 10-15 minutes with some materials/lesson while she puts him in a swing or keeps his body calm. And there are SLPs getting trained in Play Project and Hanen. Both are AMAZING. 

That's where that team thing is good.

The brilliant thing about play is it lets the therapist help the dc discover the skills naturally, inductively. It prevents the whole robotic thing of "And now I will do the greeting I learned in my ABA classroom." It's not like he's just gonna shazam and learn all this stuff. Well maybe he will. But being in it for the long-haul, developing skills naturally by letting them flow from relationship, is really good! 

Also, when they play, they aren't just teaching the dc about the toys and how to play or even the language. They're also measuring and monitoring how much they can make with demands, how he's handling stress, and they're pushing how much they can do with non-preferred, with something that wasn't the dc's choice, etc. So they're building skills with flexibility, reciprocity, problem solving, meeting demands, etc. It will make him easier to work with. I call it gentling. The behaviorist works with my ds and she gentles him, like a wild colt. :biggrin:

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3 hours ago, PeterPan said:

Is there a reason these therapies are either/or for you? Your dc will enjoy ALL the interactions you can give him and eat up ALL the high quality interventions you can provide. If your insurance will pay for it, stack and do more, sure. Like our behaviorist comes to our home and helps me by text/email. That's never inconvenient. The OT, SLP, counseling (psych in our case), etc., I stack with one trip into the big city. Sometimes you can find a place with multiple services under one roof, boom.

Finances and having 3 other kids means my resources and time are limited. If I could focus all my energy on one kid life would be so much simpler. I realize that more specialized help would be better than less, but at $20 a pop per appointment, and living off of a single teacher's income, we just have to focus on what we can do. so speech before psych because that will ensure the language is in place. (I have an eval set up).

I also have an intake scheduled with a really good ABA place and feel like they will be the best start for helping me think through behaviors and make those hard decisions you referred to, like, what benefit does this class provide, etc.

I've also had one professional try to talk me into enrolling him in the public school so that "the professionals" can take over everything and manage it all for me. They even went so far as to tell me to avoid all homeschool classes because they're "socially awkward". 

Realistically I don't want to use meds. I just was having a "If I put him on meds, the autism will go away and life will return to normal" moment. But I realize that's not going to happen. It's too multi-faceted. I also need to get back to his primary and give her the paperwork to get her on board medically as well. 

I've got wood to split this afternoon, so I think the work will help clear my head and work out some of the frustration too. *sigh* 

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To maximize that speech eval, find out what tests they have and are planning to run. The SLPs were SHOCKED how horribly my ds did on the TNL and SPELT, and these were things the practice actually had to buy because they didn't even own them. It's much more common to run fast food tests like the CELF (the CASL is slightly better but still not everything) and then go see, fine, no story here. How old is he? Unfortunately, on something like the Social Language Development Test the minimum score required to "pass" at age 6 is, drum roll... 1. Yup. That's uno, one, a single point. That's a pass. Can a gifted or bright 6 or 7 year old pass at that age? Yup. Will that same kid pass at 9 or 10? Haha.

What we found is that it was easy to get language about emotion (name this emotion, blah blah), but ds couldn't actually DO it in the moment. That's the interoception gap. You might like for an SLP or OT trained in interoception, if actually improving how they function is a goal. We've done plenty of programs now with a variety of practitioners, and that's always the gap, can he actually apply it, does it make a difference. Some kids (ADHD, better interoception, whatever) can just apply. But a kid like mine? Nope, huge gap.

Someone was just telling me new stats/data on how moms of kids with disabilities do services, get information etc. Apparently we're unusual. And yeah, it's pretty common to get told it would go better if you let professionals do it. And sure, maybe the mix overall would have some really good positives! But there are also a lot of reasons why people give up on the system and pull their kids out. To me, I try to stay informed, learn all I can, and walk the middle of that. If I'm trained in the same things they are and I up my game, then I'm the one who is free and available all the time to implement that therapy or technique. Sometimes they're better because they're more socially typical, more energized, more fresh, more novel, whatever. There are people I use to form my ds' team that are really good! And sometimes they're trying to pull their weight and struggling and sometimes they get tossed. I may toss our current OT, because she's still stressing ds out and she's not hitting any of my goals. We'll see. 

I think it's ok to look at life honestly and make good decisions. 

1 hour ago, mamashark said:

I've got wood to split this afternoon

Yup. 

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oh, and I got the results of my daughter's extensive food allergy testing back that we had done to help track down the cause of her motor tics. Among some other easier things, she's sensitive to eggs.

I am going to go cry while I gather today's dozen eggs from the coop this afternoon. ?

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((hugs))

Something to look into regarding costs: our state has a supplementary state insurance that children who have documented disabilities can apply for. We were told about it by a hospital social worker at an evaluation appointment for one of my kids. I had never heard about it before that. It's possible that your state might have something like that as well. You could try to check online or ask your physicians' office or even the county board of developmental disabilities. I would guess that the county is likely to know.

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2 hours ago, nwahomeschoolmom said:

The facts that we homeschool is the main reason we didn't get a diagnosis of autism...the report even says it verbatim.  "We think this is due to homeschooling"!  I remember when I posted that, Peter Pan was floored.  It has taken me a while to process because all of this stuff was new to me and I was a bit overwhelmed, but I wish I had taken the psychologist on a bit more. She was also pretty much implying we needed to put him in school, which we didn't.

My son has had activities with public school kids and homeschool kids and he generally says that the homeschool kids are MORE friendly and sociable.  Whether they are more awkward or not, I'm not sure, but my son prefers the environment : )

wow that's crazy.

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