Are any ASD markers absolute across the board?

[Seeking Squirrels]

I'm wondering if there any aspects/markers/symptoms (? what is the correct terminology here?) that are *always* present in an ASD? If so, what are they?

 

We started evaluations for DD7 about a year and a half ago. (Though I noticed things that made me think we should take her in much, much earlier). She was diagnosed ADHD by a behavioral psychologist and he referred us to an OT who diagnosed SPD. The behavioral psychologist didn't say right away on ASD. He said that on paper, she scores high. But in person he wasn't so sure. He settled on no for just two reasons. He says 1- she communicates well and 2- she initiates interaction. I agree with the initiating interaction. As for communicating well, that depends on exactly what that would be defined as. I agree to a point, but I do feel there are multiple communication issues.

 

So we accepted this and pursued OT for SPD. Since then, we have had multiple people suggest ASD to us. Some who are familiar with someone on the spectrum, some who are nurses who see it. Recently I found out my cousin's child was diagnosed high functioning autism and my aunt said that they initially got the exact same answer for the same points but upon further evaluation at the children's hospital he was diagnosed.

 

So are those two points really absolute markers that must be present? Or do we need a second opinion? I don't want to be the type that is pushing for a diagnosis that isn't there, I have no desire for that. But I do feel he maybe dismissed the possibility too quickly, especially since even he said that she scores high on paper. I have had a suspicion of HF autism for her for years. Actually I also suspect I am an aspie myself. I just want to know, one way or the other.

[dancingmama]

I don't know of absolute markers but I do believe that girls present differently than boys and you want someone who has extensive knowledge on identifying girls with asd.

[Tanaqui]

As an autistic individual, I can tell you that *many* autistics communicate well... or if we don't, we still have the appearance of communicating well, if that makes any sense. (For that matter, I was just reading an article last week suggesting that language delay in autism is a lot less common than has been previously believed.)

 

As for initiating interaction, there is such a thing as the extroverted autistic. So no, I don't think those two things are universals. The latter may be more common among autistics, especially young ones, but I doubt it's universal. It's also important to remember that female autistics tend to superficially appear "less autistic" than males, especially when it comes to interpersonal relations. (Why this should be, I'm not sure.)

 

However, it may not really be necessary to get the most accurate diagnosis so long as the diagnosis you have gets her the services she needs. You have to decide for yourself whether it's worth getting a second (or third, or fourth, or fifth...) opinion. If you do decide to pursue this, I strongly suggest you look for a specialist in autism, especially one with a lot of experience diagnosing girls and women.

[MomatHWTK]

Start here:

http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf

[geodob]

The markers are actually 'variables'.

Autism is diagnosed using Algorithms.

Where the different sub-tests, are added as variables to the algorithm.

 

Though various algorithms are used, with different conclusions.

But these different algorithms are used, because Autism is recognized as a Spectrum.

That effects individuals in different ways.

 

 

[Lecka]

No, those are not absolute markers.  

 

I would get a second opinion, too.  

 

 

[kbutton]

From the CDC website...DSM 5:

 

Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

 

The DSM doesn't say you can't communicate well--it says you must have deficits in these areas. Each area has it's pieces, so she could have trouble with sharing interests with others for number 1, but be fine with back and forth conversation--and even these examples are not considered exhaustive. The criteria can be met by history, not just present status. So, if you have examples of ANYTHING odd or anywhere where she falls short. document them by describing them, transcribing them, videoing, etc. Talk about frequency. Map your concerns to something in this list. This list says it's not exhaustive, so go ahead and look at the actual DSM text for more information.

 

I also think you need a second opinion with someone who diagnoses girls. 

[Plink]

When diagnosing a spectrum disorder, professionals have only the DSM, their observations, testing, and their knowledge of the disorder to go by.  It is an in-exact science.  Different professionals may (or may not) give you different results.  

[ktgrok]

My son has Aspergers. He communicates when and how he wants to, and can "turn it on" sometimes, but it's hard. He initiates interaction sometimes, but not all the time. 

[PeterPan]

I'll take this a different direction and ask what changes for you if you get the label?  You already have ASD minus 1.  I mean, seriously, that's what ADHD + SPD is.  So the treatments are the same, whether you call it ADHD + SPD or ASD.  You still need OT, social skills, etc. etc.  Is there a funding or insurance coverage difference?  If your insurance will cover the therapies with an ADHD + SPD label, maybe you're done?  Many people have an unfolding process, with evals at one age saying one thing and a few years later unfolding the rest.  But if further evals and a different label would change your access to care, that's different.  If both ways you get the treatment, maybe don't bother?  

 

In reality, that's not what I did.  We saw three psychs in a year and sort of got it straightened out.  But I'm just saying what you could do.  It's really a balancing act, where you're trying to get access to needed services, get funding, get explanations, think long-term about what will best get you access to those things...

[Lecka]

They are not the same.

 

There would be no reason to look into speech therapy with ADHD + SPD, as far as I know.

 

It would be worth it to look into speech therapy.

 

Sure, *maybe* you find out that there is some pragmatic speech issue and it totally overlaps with social skills.  But maybe not.

 

The op states that she sees communication issues.  

 

 

There are also some other strategies that are either specific to autism, or else, they are more commonly used or thought to be a good first step for autism, compared to for ADHD + SPD.  

 

When you see communication issues, but none of the "let's try this first" strategies are aimed at someone who may have communication issues, but instead are going to be aimed at sensory issues or increasing focus, but with an assumption that there is no communication issue, then I think it is worth it to add autism.

 

Now -- if you are doing things at home, you are free to read books and try strategies, etc, and not feel like you are stuck only trying things that are recommended for ADHD + SPD.

 

But if you are working with other people, then I think that it is a disservice for your daughter to be considered as a child who does not have communication issues, OR a child whose communication issues are consistent with ADHD, when that may not be the case.

 

She will be missing out on things that might work out great for her.  

 

For example -- visual schedules.  That is a top recommendation for autism.  But I don't think it is a top recommendation for ADHD + SPD.

 

Then, there are some communication gaps that are known to be common for autism, and people may go and look for them to see if they are there.  For example, asking for help is one of these.  For autism, people will have in their mind "we need to make sure this child does not have a gap in asking for help."  They would not have any reason to think that with ADHD + SPD.

 

I am concerned that things that are communication gaps or issues, could be seen/perceived as "this child is not focusing, we need to help her focus" instead of "this child does not have this communication skill or it is a weaker skill, let's help her to practice this skill."  

 

It does not make a lot of sense to me, to read that a parent has concerns about communication issues, and then starts taking their child to OT.  I think it is *possible* that the communication issues are stemming from OT-related issues.  But it does not seem like it is the most likely thing to assume, to me.  I would not be happy to walk out of the door with that recommendation.  

 

I don't really know that speech therapy is the thing that would make sense, I do not know about this area and if there is another specialty that would make more sense, or another area of approach.

 

But I don't think it is fair to leave someone with communication issues and act like OT is going to teach communication skills or target communication skills.  Is that what OT does?  As far as I know, that may be a part of OT, but that is not the specialty of OT.  The specialty of OT can be more to help kids be in a state where they are able to learn and able to communicate.  If their communication skills are all fine, just impacted at times by sensory issues, then that makes sense.  But if that is not the case, I don't think it is fair to anyone involved.  

[Seeking Squirrels]

Thank you all for your responses. I think I will begin looking into a second opinion. What is the best way to go about this? It took a long time to get from first step to SPD dx. Do I have to start back at the beginning with the paperwork through her pediatrician? Or with the dx we currently have can I just call up a specialist and ask for an eval?

 

One reason to want the diagnosis if it is there is for school. We go through a charter that she attends once-a-week for co-op style classes and they buy some of our curriculum. In turn she has to do the state testing. Her educational specialist has suggested that we get her on an IEP to opt her out of those tests. This may also open up some options for therapies through the system. I don't think it will change our insurance status. They pay a large chunk of the cost for OT, but we still have a co-pay at each visit. Mostly, though, I just want to know for myself. By knowing what we're dealing with, I can research the right things and find the best ways to help her. I never know if the way she is acting is because she is acting up or if there's this underlying issue that's not being considered. I feel like it's a disservice to her if I try to treat her and her behavior in a typical way if there is an atypical reason behind it. You don't yell at a deaf child for not hearing you, but if you didn't know they were deaf you might get upset that they aren't listening. I fear that's been happening around here a lot. I think sometimes we expect things of her that are maybe beyond her reach without special help/consideration.

 

She communicates much better with adults than with children. Well some adults, she can have difficulties with adults too, it's just more common with kids. With kids, sometimes she looks like she just doesn't know what she's supposed to say or do. Today a boy at the playground came up and asked her something and she just looked at him. He asked again and she looked toward me before just saying "umm". After he started walking away, she answered him (but more to me, not projecting her voice to him). Then she repeated herself. Then she repeated it again. I had to tell her "it's okay honey, maybe he can't hear you" to get her to stop repeating her answer. It wasn't a difficult question, he was just starting a conversation. And actually, come to think of it, when she initiates interaction, it's typically to show something, or to tell something. She doesn't really initiate conversation.

 

But on the flip side of that, she does have friends at the charter program. I haven't had much opportunity to observe them together, but I have heard their names from her, and when we went to the halloween party she actively seeked them out and spent some of the time with them (though more of the time with just her sister). One of the teachers told me in reference to DD and one of the friends she has two classes with: "they're so cute together."

 

I don't know. I really don't know anymore. I guess that's why I'm not the doctor! How do I find out if someone has experience dxing girls in particular? I was going to maybe get the name of whomever my cousin went to, but he was taking his son. I have such a hard time calling and figuring out things like this. I just want someone to tell me when and where to show up. :/

[Tanaqui]

I have such a hard time calling and figuring out things like this. I just want someone to tell me when and where to show up. :/

 

I know the feeling. Here's a sample script you might use:

 

"Hi, I am hoping to schedule an appointment for my daughter. We suspect she might be autistic. Before we do this, I have a question. I've read that girls tend to present differently from boys, and that this means girls take longer to get diagnosed. Does your office have much experience diagnosing girls?"

 

If they say "no", that might not be a dealkiller. If they try to minimize your concern or brush you off, then it IS.

 

[kbutton]

 

She communicates much better with adults than with children. Well some adults, she can have difficulties with adults too, it's just more common with kids. With kids, sometimes she looks like she just doesn't know what she's supposed to say or do. Today a boy at the playground came up and asked her something and she just looked at him. He asked again and she looked toward me before just saying "umm". After he started walking away, she answered him (but more to me, not projecting her voice to him). Then she repeated herself. Then she repeated it again. I had to tell her "it's okay honey, maybe he can't hear you" to get her to stop repeating her answer. It wasn't a difficult question, he was just starting a conversation. And actually, come to think of it, when she initiates interaction, it's typically to show something, or to tell something. She doesn't really initiate conversation.

 

But on the flip side of that, she does have friends at the charter program. I haven't had much opportunity to observe them together, but I have heard their names from her, and when we went to the halloween party she actively seeked them out and spent some of the time with them (though more of the time with just her sister). One of the teachers told me in reference to DD and one of the friends she has two classes with: "they're so cute together."

 

 

This is very much like my 2e son with PDD-NOS (would now be autism with level 1 support, I think). He has friends, but his communication is definitely different. Today, we were in line somewhere, and a little girl in the cart ahead of us had been talking to me (probably 3 years old). He walked up, and this little girl started talking to him as well-saying hello. He kept looking away and giving minimal answers until I helped him join the conversation. She picked up right away that he was my son, and when he wasn't talking right away to her, she directed her questions about him to me. It was very interesting.

[ktgrok]

Communicating better with adults than children is a sign of ASD, especially what was called Aspergers but isn't called that anymore. 

[PeterPan]

I think what Lecka is bringing up here is that there's more detailed testing you could get at a full autism clinic.  For instance, you're talking about issues with reciprocity, which are obviously markers.  At our ps they will have the SLP do a pragmatics test (notoriously unreliable at this age) and use that to determine qualifying for social skills intervention.  They will do social skills intervention under an ASD label *or* simply on the basis of the pragmatics test.  Then the person servicing that IEP goals will vary, like whether that's an SLP or the OT doing the social skills instruction.  But those are separate questions (how you test, what services, who provides the services).

 

So the word to the op is that more detailed testing is available.  In a thorough ASD eval they can run stuff like this and have more evals.  They have tools like the ADOS, pragmatics tests, etc. etc.  Yes, my ds has that discrepancy between conversing with adults and kids.  The school wanted to blame it on homeschooling, which is of course crock.  I pointed out that he gets therapy from adults, meaning he has had $$$$ (untold thousands) in therapy to be able to converse with adults but that he couldn't even respond to the attempts of a much younger child to initiate conversation.  I was having to prompt him.  

 

Now in your scenario, do you have to prompt her, or does she merely respond slowly?  Those are two different scenarios.  It sounds like you're saying with time she does come up with an appropriate response.  So then I'd be asking what her processing speed is and whether that matches, kwim?  I think you have good reasons here to have a thorough psych eval.  Was this a neuropsych, some kind of MD like a neurologist, or what?  Someone is going to need to spend a lot more TIME with her to eval and sort these things out.  

 

For the visual schedules, our ps put them into ds' IEP while refusing to acknowledge both the ADHD and the ASD.  Ie. they put them in solely on the SPD diagnosis by the OT.  Makes my HEAD SPIN how idiotic stuff is.  So anyways, I don't know how every school is doing things, but that's how our school is doing things.  Yes, when everything that works for him is coming from the ASD community, it kinda seems like it ought to be obvious.  No I never needed such things with dd, mercy.

 

For Anne, I think the communication issues you're describing are concerning and it's appropriate to want them sorted out.  It's reasonable for you to want to know if this a pragmatics issue or a processing speed thing (that she had the response but was just slow) or what.  For ds, he was just in his own world.  Like I would have to say to him "Your classmate said bye to you.  You can say bye to them and wave."  That's where we were.  But I can tell you he blew a pragmatics test out of the water.  He had a section with a raw score of 2 (pitifully low) and because he was young even that tiny score bumped him out of range for flagging.  The rest they let slide, being wowed by his ability to say "I would be flexible!" over and over.  Remind yourself NOT to teach the kid socially normal code words before you go take them for evals, mercy.  And I could have taken in articles and data showing that pattern, that kids bluff it.  It's obvious that his 99th %ile vocabulary was allowing him to do that.  I'm just on a rabbit trail here saying don't expect too much precision out of individual tests.  They have to look at it as a whole, and they need to slow down and take time.  I think your gut is probably accurate, because you have spent the most time with the dc.  You might be so used to her that there are things she does that you don't even think to comment on.  Or it might be that this round it doesn't get flagged and that 2 or 3 years from now you would go back and her peers would have pulled away.  At that point her delays and lesser ability to progress forward in that area developmentally would be more apparent.  That's what the data shows, that kids can get missed at these ages and that they're much easier to catch (on pragmatics, etc.) as they approach 10-12.  

 

So I go back to my point.  Either way you should be intervening on EVERYTHING you are seeing as red flag issues, whether you stay with ADHD+SPD or go for a longer ASD eval.  Either way you should be working on everything you're finding.  And in some cases they'll find the same things and two psychs will disagree, with one saying ADHD with social delay and the other saying ASD.  There just is that disagreement right now.  

[PeterPan]

This is very much like my 2e son with PDD-NOS (would now be autism with level 1 support, I think). He has friends, but his communication is definitely different. Today, we were in line somewhere, and a little girl in the cart ahead of us had been talking to me (probably 3 years old). He walked up, and this little girl started talking to him as well-saying hello. He kept looking away and giving minimal answers until I helped him join the conversation. She picked up right away that he was my son, and when he wasn't talking right away to her, she directed her questions about him to me. It was very interesting.

Yup, this cashier at the grocery store, who had seen us two weeks in a row (because yes I could actually TAKE him in a grocery store two weeks in a row!) was trying to be friendly and say hi.  When he didn't respond, she went into "Are you shy? You don't have to be shy with me.  I'm nice!"  And internally I'm SCREAMING, like NO HE'S NOT SHY, HE HAS AUTISM!!!!!!!!!!!!  But it's invisible.  So he's just standing there not responding and people are thinking he's bad.  He's distinctly NOT shy.  He's just not responsive, lol.

[texasmama]

In my experience, most kids with ADHD and SPD eventually get an ASD diagnosis.  At 7, there are developmental issues at play which can mask the eventual diagnosis.    You have received good advice already, but I wanted to toss in my two cents on that.

 

[PeterPan]

Anne, does your charter provide services?  What are you wanting them to provide?  Are you having behavioral issues and want help with that?  I think when the dc is in school full time, they notice things and prompt evals and sort of push it through the system.  When we homeschool, we have this disconnect.  My ds has a full IEP for our state disability scholarship program, and that was an amazing progress.  It took quite a bit of time for them to do evals, connect, and develop IEP goals.  It was a full team approach.  

 

I keep going back to this, but just getting a label doesn't change things.  We've seen three psychs.  When they finally got it to ASD, it was still like OK, BUT NOW WHAT??  It has taken me months to realize how many things I thought were just him were really things that could change.  The process was uncomfortable for me, because basically to finally get help I had to admit how bad things were.  I got accusations of being a bad parent, blah blah.  It was really ugly.  

 

I think you might want to think of it in terms of a team process.  You can even have a private team that you pay for AND a ps team that the school provides for the IEP process.  If you're taking the time to do a 2nd set of evals, I would do them with a team, at a place that schools recognize as doing multi-factored (team, multi-professional) evals.  That's a way to approach it.  So then you're being seen by an SLP, OT, psych, etc., all of whom specialize in ASD.  They all see, all run tests, have you fill out forms, then they sit together and hash it out and go through the DSM.  That can be really good.  And maybe start asking around in your community to find where people are going for their evals and who does evals like that.  It's not that evals *have* to be that way, but it can be a really good way to go.  It's what schools around here like to see.  

[PeterPan]

In my experience, most kids with ADHD and SPD eventually get an ASD diagnosis.  At 7, there are developmental issues at play which can mask the eventual diagnosis.    You have received good advice already, but I wanted to toss in my two cents on that.

Seriously.  Because if you look at the form the OT uses to diagnose SPD, it IS an ASD diagnosis.  The whole thing is such a crock.

[ktgrok]

Yup, this cashier at the grocery store, who had seen us two weeks in a row (because yes I could actually TAKE him in a grocery store two weeks in a row!) was trying to be friendly and say hi.  When he didn't respond, she went into "Are you shy? You don't have to be shy with me.  I'm nice!"  And internally I'm SCREAMING, like NO HE'S NOT SHY, HE HAS AUTISM!!!!!!!!!!!!  But it's invisible.  So he's just standing there not responding and people are thinking he's bad.  He's distinctly NOT shy.  He's just not responsive, lol.

 

Yup. I'd internally labled my own son as shy..but at one point while having him not respond to yet another grocery cashier I realized that at 10 years old, this was something beyond shy. He was diagnosed at 11.

[Seeking Squirrels]

....

 

Now in your scenario, do you have to prompt her, or does she merely respond slowly?  Those are two different scenarios.  It sounds like you're saying with time she does come up with an appropriate response.  So then I'd be asking what her processing speed is and whether that matches, kwim?  I think you have good reasons here to have a thorough psych eval.  Was this a neuropsych, some kind of MD like a neurologist, or what?  Someone is going to need to spend a lot more TIME with her to eval and sort these things out.  

 

......  For ds, he was just in his own world.  Like I would have to say to him "Your classmate said bye to you.  You can say bye to them and wave."  ......

Sometimes I prompt her, sometimes I'm further removed from what she's doing so I don't prompt her and I see that she doesn't respond or appears to do so awkwardly. They did a processing speed test at my request and said she did fine on it. I had noticed other times that I felt maybe she was just slowly processing. When we tell her to do or stop doing something, I see that even when she hears us and isn't seeming like she's intentionally disregarding, it takes her several seconds to comply. He isn't a neuropsych, he's a psychologist specializing in behavior management.

 

Yes, she often seems like that. I've had to say the same to her. "So n so just told you bye" "Your friend is talking to you"

 

And the thing is, this is just the communication things that I *do* see even after he said her communication is fine. Communication is actually pretty low on my list of things that concern me. Just this evening she had a major meltdown because we didn't follow our normal bedtime routine. 3yo was over-tired and we had to hurry her along to bed, so she got her story and lights out while DD7 was still having her bedtime snack. She completely lost it. I should have seen it coming but I'm under the weather and just didn't. She just couldn't handle that 1-she missed hearing sister's story 2-daddy would have to read to her on the couch instead of her room because sister would be asleep. He ended up reading her both her story and the same one he read to sister and did so with the booklight in her room. Even still it took her a long time to calm down and accept this and an hour later she is still unsettled and can't get to sleep.

 

Anne, does your charter provide services?  What are you wanting them to provide?  Are you having behavioral issues and want help with that?  I think when the dc is in school full time, they notice things and prompt evals and sort of push it through the system.  When we homeschool, we have this disconnect.  My ds has a full IEP for our state disability scholarship program, and that was an amazing progress.  It took quite a bit of time for them to do evals, connect, and develop IEP goals.  It was a full team approach.  

 

........

The charter itself doesn't, but she mentioned that there may be some services available through the PS once she has an IEP. I'm not necessarily wanting anything from them, only noting that there could be extra coming from them and every little bit helps. I'm really completely clueless how that system works so I'm going only off of the very little her ES told me when she brought it up. It was recommended to do the IEP because it would be easier on the charter's end if she has the IEP to opt out of testing than if we just try to opt her out without the IEP.

 

Yes, lots of behavioral issues.

[geodob]

Their are Autism support groups in just about every city and town.

So quite likely you have one in your area?

Could be listed in your phone book?

They would be very helpful with finding someone experienced with ASD diagnosis.

As well as ongoing support.

[Crimson Wife]

But on the flip side of that, she does have friends at the charter program. I haven't had much opportunity to observe them together, but I have heard their names from her, and when we went to the halloween party she actively seeked them out and spent some of the time with them (though more of the time with just her sister). One of the teachers told me in reference to DD and one of the friends she has two classes with: "they're so cute together."

 

This does not rule out ASD. My DD is very motivated to interact socially with other kids and she does have friends in her special ed class and at her ABA center. She just struggles with appropriate social interaction with neurotypical kids (something that was painfully obvious tonight at Daisy Girl Scouts, where she's the only SN child).

[suenos]

Seriously.  Because if you look at the form the OT uses to diagnose SPD, it IS an ASD diagnosis.  The whole thing is such a crock.

Gosh, I'm such a newbie - but I've got an ADHD + SPD kiddo, ruled out ASD (or so I thought)...would you mind explaining why ADHD + SPD is an ASD diagnosis waiting to happen???  I think they're all related, personally...but very curious...

[PeterPan]

Suenos, I had an OT today swear up and down that she's sure SPD occurs without being connected to ASD.  People seem to have opinions.  I don't think "ruled out" is every very solid.  Kids don't get the label at one age then go back and get it a few years later.  This kind of label creep is very common.  

 

You can see a different psych and get a different opinion.  Some of this is relying on things you say/notice when filling out forms, and maybe it's not yet distinguishing him enough from his peers that you're noticing things.  Then, as they hit 10, 11, 12, their peers pull away and it's WOW obvious.  

 

But, you know, maybe the OT was right.  But when you have a kid like mine and go ok: ADHD-inattentive (which was obviously incorrect), social delay, cognitive rigidity due to anxiety, and SPD...  at what point is that actually just gonna tip over and get around to calling it ASD?  The first psych called it all that, 2nd psych said your explanations are incomplete, and 3rd did a much longer look and got to ASD.

 

So I'm not an expert and I have no evidence, just cynicism.  I guess just look at the DSM and decide for yourself.  And yes, the SPD eval form I filled out for his diagnosis had a ton of things that were straight down the line for ASD diagnosis.  You really have to ask what's *missing* at that point that didn't tip you over.  That's the most interesting question.  So you're at ASD -1?  ASD-2?  Kwim?  That's interesting to ponder.  Maybe those things just really aren't there.  Awesome.  Or maybe they're there and they didn't show up during the eval...

[Lecka]

I read something fairly recently, that seemed like it made a good case for there being kids who had SPD but did not have ASD.  

 

But there are many people who are told "SPD" and later it is autism.  

 

It is something to be aware of, but if the shoe doesn't fit, then don't worry about it.  

 

As a homeschooler i think you have an extra burden, too.  You do not have the same type and amount of observations as a public school student would have.  Maybe you are doing a great job of accommodating and scaffolding with your child, and so your child is succeeding in certain areas..... but if he were not receiving those supports, maybe he would be observed to have those weak areas.  

 

There are also people who, because of their worldview, when they see kids who are on the borderline, they would rather NOT diagnose ASD.  While other people, may do the opposite.  It is a diagnose that can be very clear for some people.  Then for other people, maybe it is not so clear-cut in some ways.  

 

But anyway ----- I don't agree that ADHD + SPD is an ASD diagnosis waiting to happen.  

 

But, I think it is something to keep in mind, too, because there are a lot of similarities, and I think at a certain point the difference is going to come down to social things.

 

If you do not have observations of what your child has done in various settings where a social problem might appear, b/c your child has instead always been in a supportive environment...... the obvious, huge plus is your child has been in a supportive environment.  The con is that you may find out later about some things.  

 

There is another factor, and that is just how much you are around people who know about autism and can recognize it.  Even in schools, kids are diagnosed earlier when someone is around them who knows what they are seeing and puts the pieces together.  

 

It is not like there is an arrow pointing at a lot of kids.  There is an arrow pointing at some kids, going "ding, ding, ding," but that is not the group of kids who are ever going to be in the "maybe it is ADHD and sensory."  

 

But I do think, take ADHD and sensory and just add social, and that is going to be pretty close to ASD or ASD.  

 

But I think there are kids who have ADHD and sensory, and do not have any social issues that are not better explained by ADHD.  I think that is a thing, too.  And yet ----- even then, those kids might have the same recommendations for ways to strengthen social functioning as a child who did have ASD.

 

And then, I think there are kids who have ADHD and sensory, and who are strong socially.   

 

 

I have a 10-year-old and last year at age 9, we had ASD ruled out for him.  He has some spectrum traits, but he does not meet the criteria.  It really works for me, and I think he is old enough now, I don't wonder if certain traits will start to show up more, the way I wondered a couple of years ago.  My younger son and a close family member are on the autism spectrum.  

 

But it is really okay either way ----- it is okay to have autism, and okay not to have it.  It is not exactly a huge line drawn in the sand, with things SO different on the other side, for a lot of things.  At a certain point you have whatever set of issues you have, and they either combine to meet ASD criteria or they do not.  

 

[nature girl]

Just want to add to Lecka's comment that from everything I've read, social issues are very common in ADHD, usually due to impulsivity, immaturity and/or lack of attention to how peers are reacting, or to conversation around them. I think the flavor of social issue is probably somewhat different between kids with ADHD and ASD. My DD adores all her friends, and is extremely sociable, but has trouble with impulse control, and sometimes doesn't notice when friends are uncomfortable with how she's acting. (She's very sensitive to how my husband and I react to her though, so it's not really social blindness, I think just inattention when there's excitement around her.)

[Crimson Wife]

My DS has ADHD + anxiety + some sensory issues but Asperger's (what he was evaluated for) was ruled out because he's a bit of a shyster. He is able to charm people in a way that can sometimes border on manipulative and the pediatric neurologist says that someone "on the spectrum" wouldn't have the social savvy to do that. He misses social cues because of inattention and can be slow-to-warm-up because of the anxiety and I do think he falls into the "broad autistic phenotype" as a result. But BAP is not the same thing as ASD.

[suenos]

The inner geek in me wants to research all this...and debate constructed categories, etc..but so far at least, my experience with DS has been that it doesn't much matter at the end of the day.  He's got issues and we've got to learn how best to help him and help him help himself.  But Crimson Wife you've now given me another key term to look up...off to Google!  

[PeterPan]

The genetic studies are showing that even with people diagnosed ASD you'll have 100 people in a room and 100 different genetic explanations.  Just the fact that we're having this discussion (why do they overlap, what is being missed, how far does this or that go) shows you how overlapping this stuff is.  It's not nearly as distinct as the DSM wants it to be.  And take ADHD + sensory.  My dd has ADHD + sensory, but her ADHD -inattentive + sensory avoiding is NOTHING to the extreme my ds' ADHD-combined + sensory seeking (diagnosed SPD) is.  Would they technically call dd's sensory issues SPD?  Our last OT eval of her (this year) was so odd, I'm not sure I really got an answer on that.  But I'm just saying they're totally different manifestations.  

 

For instance, if I take dd to a noisy place like a homeschool convention, she gets a headache.  If I take ds to that same convention, he becomes uncontrollable and starts hitting and punching.  You can put him in noise canceling headphones and he'll hide in a dark place (under someone's booth) and be fine.  Take the hearing protection off, back to uncontrollable.  

 

Just totally different levels of extreme.  So even here we could all be saying ADHD + sensory and not be meaning the same thing, kwim?  

 

My personal theory is I only have to solve one person's problems, my own.  I might have theories about how all this fits together or notice things or whatever, but in reality I have to figure out what to do for my own ds, my own situation.  Terms, theories, DSM, none of that matters in the end, only what has the answers.  And yes, as Lecka said, the ps will call it all kinds of things but then at the end of the day use the same things (Zones, SocialThinking, etc.) on them, whether they're calling it ADHD or ASD or what.

[Lecka]

Even if you have an autism diagnosis, here is my experience:  People will always ask two things:  One is:  what are the sensory needs, or a question about a sensory area.  Then two is:  what kind of schedule do you use or a question about transitions or help from knowing the schedule ahead  (so, asking about schedules/transitions).  

 

Those are the two big questions that people think "I had better ask this for autism."  (Ime -- with my son, who may already be coming across in some way that leads to these questions, granted.)  

 

Then ----- from there, it is like ------  "is there anything you want to tell me?" and then from there it is like "I am sure after a couple of weeks I will have gotten to know your child and have a handle on how he is."  

 

So ------ it is the furthest possible thing from having autism or ASD mean "oh, I know what this child will be like."  It is really not giving out that kind of information about individual children at all.  

 

But all the autism information and strategies can be helpful to get to know a child, and then have ideas for what to try.  

 

But it only works in one direction, it doesn't work in the direction of having the information and having that give a lot of information about an individual child.

 

And, they are all individual children.  Some will have similarities, but they will never be so similar that you can skip the "getting to know you phase" and then making individual decisions and adaptations.

 

 

[ElizaG]

Yup, this cashier at the grocery store, who had seen us two weeks in a row (because yes I could actually TAKE him in a grocery store two weeks in a row!) was trying to be friendly and say hi.  When he didn't respond, she went into "Are you shy? You don't have to be shy with me.  I'm nice!"  And internally I'm SCREAMING, like NO HE'S NOT SHY, HE HAS AUTISM!!!!!!!!!!!!  But it's invisible.  So he's just standing there not responding and people are thinking he's bad.  He's distinctly NOT shy.  He's just not responsive, lol.

I'm not sure what you meant here, but it sounds as if you're saying that a shy child is a "bad child."  Or maybe it's that you think other people regard shy children as bad, but don't regard children with autism as bad?

 

There are a lot of posters on the boards who have children who are shy, or have other types of social difficulties.   Some are diagnosed with ASD, some with ADHD, some with social anxiety, and others with no diagnosis except "acting strange."   Whatever the case, parents have to find ways to help them gently to interact more appropriately with others.

 

As Lecka said, there isn't a sharp dividing line.   And "it's okay to have autism, and it's okay not to have it."  It's even okay to be shy, as long as you're working on it.  :001_smile:   (And yes, I know your DS isn't shy.  Just speaking generally!)

[texasmama]

Shy = social anxiety.  No one has the right to embarrass kids or discuss their anxiety in front of them, particularly strangers.  However, it happens a lot due to ignorance, and the parent is left standing there not wanting or needing to give information about their child's personal medical and psychological and developmental history.

 

I have heard, "If you know one ASD kid, you know one ASD kid."  I think there is much truth in that. There are some general characteristics in common (enough to be able to arrive at DSM diagnostic criteria), but everyone is affected differently. 

 

Often when people approach my ASD kid and are just being friendly, I tense up inside.  He responds well, but I know what these interactions cost him.  Eye contact and interactions with people (particularly strangers), standing close to people, crowds, etc. are all painful for him.  He has learned to respond appropriately most of the time, but I have a lot of empathy for him.  

[PeterPan]

Shy = social anxiety.  No one has the right to embarrass kids or discuss their anxiety in front of them, particularly strangers.  However, it happens a lot due to ignorance, and the parent is left standing there not wanting or needing to give information about their child's personal medical and psychological and developmental history.

Bingo.  It was so frustrating because it was not the right setting to have that discussion, no need, not in front of him, not with a grocery clerk when his behavior was otherwise reasonable.  (He had been ramming me with a cart in another part of the store.  Not like it was reasonable the whole time, lol.)  For me, I use it as an explanation after the fact when he has had a meltdown in front of people or when I need to protect him or make sure instructors are appropriately observant.  But just some random grocery store clerk and in front of him??  No way.  Because frankly these things are his private business.  There are plenty of adults walking around with ASD, and they don't have to wear dog tags and be stigmatized and talked about.  They might be quirky or mess up or live careful lives of accommodations and workarounds, and it's their own business what they disclose or don't disclose.  

 

Rabbit trail again.

[Seeking Squirrels]

I hadn't noticed the new activity on this thread, but you all have me thinking about a lot. I've been very confused lately about all of this. Part of me just really wants to be able to put every behavior into a mental box so I can know what it means and what to do with it. I *know* it doesn't work this way. I know kids don't fit in boxes, behaviors don't come down to one specific dx or cause, and labels don't define the child. But it's hard for me to witness a behavior and not know if it's a)developmentally and age appropriate, b) a child acting up/needing consequences, c) a sensory issue, or d) something else we haven't yet found that puts it beyond their control. I realize most behaviors aren't going to be ONE of those things, but I'm finding it hard to know how to deal with them not knowing where they fall. I feel like I've done a horrible job trying to implement everything we learned through OT. I just don't know how to use the strategies in a practical way. It always makes sense when we're there and the OT is telling me. But then we go home and everything falls apart and I just feel clueless as to what I'm supposed to do. So back to OT we go and they say "did you do xyz?" and I have to say "no, it didn't even cross my mind. When/how was that supposed to happen?" I need "a" happens, you do "x", "b" happens you do "y".....but it just doesn't work that way. So I flounder.

 

I know this has just been long and rambling and I'm sorry for that. Today has been a really rough day. I ended up hiding and crying for nearly an hour. I just don't know what to do anymore.

[Lecka]

This may not be your answer, at all, but when  my son started ABA therapy, we got a behavior plan that summed up all those "if a then try this, if b then try this" types of things.  I got clear recommendations, and they were adjusted weekly or so as I would meet with the therapist and problem solve with her.  

 

I was in a bad place prior to that, it really helped me.  

 

That might not be appropriate for you, but I am sharing my experience -- and that is my experience.  

 

If it is autism then someone who knows about autism and can help you set up a behavior plan is helpful for a lot of people.

 

It is really just:  If this happens, try this.  But updated every week.  And, really, actually specific.  Not vague and difficult.  

[kbutton]

Anne, I totally understand that feeling.  :grouphug:

 

I think Lecka is right. We never had ABA (and now it would not be appropriate), but I think what she is saying would help a lot.

 

Alternatively, can you diagram what you are learning on a matrix or with a web diagram and map it to possible behaviors? Maybe trying to show the overlapping areas would help you think it out, and then you can take it to the OT and each person you're working with to get some clarify. Say, "This is what I understand. Is this correct? Am I forgetting possible tools? Would you add to my diagram?" Just a thought. I wish I had thought of doing something like that during some of our therapies, including OT. If you have therapies that are dangling in your diagram or behaviors with no targeting therapy, those are areas that stand out as needing a strategy and/or needing to be clarified. 

[Crimson Wife]

I hadn't noticed the new activity on this thread, but you all have me thinking about a lot. I've been very confused lately about all of this. Part of me just really wants to be able to put every behavior into a mental box so I can know what it means and what to do with it. I *know* it doesn't work this way. I know kids don't fit in boxes, behaviors don't come down to one specific dx or cause, and labels don't define the child. .

 

I felt like this after we learned about my little one's hearing loss. All of a sudden that called into question whether or not she actually has autism. Seeing other kids with hearing loss at the parent-child workshop in June clarified that she has some sort of LD's and/or developmental disabilities in addition to the physical disability. Technically she's too old for the "Global Developmental Delay" diagnosis that she originally had as a toddler but honestly it's the one that fits the best since she has delays in multiple domains.

 

[suenos]

I hadn't noticed the new activity on this thread, but you all have me thinking about a lot. I've been very confused lately about all of this. Part of me just really wants to be able to put every behavior into a mental box so I can know what it means and what to do with it. I *know* it doesn't work this way. I know kids don't fit in boxes, behaviors don't come down to one specific dx or cause, and labels don't define the child. But it's hard for me to witness a behavior and not know if it's a)developmentally and age appropriate, b) a child acting up/needing consequences, c) a sensory issue, or d) something else we haven't yet found that puts it beyond their control. I realize most behaviors aren't going to be ONE of those things, but I'm finding it hard to know how to deal with them not knowing where they fall. I feel like I've done a horrible job trying to implement everything we learned through OT. I just don't know how to use the strategies in a practical way. It always makes sense when we're there and the OT is telling me. But then we go home and everything falls apart and I just feel clueless as to what I'm supposed to do. So back to OT we go and they say "did you do xyz?" and I have to say "no, it didn't even cross my mind. When/how was that supposed to happen?" I need "a" happens, you do "x", "b" happens you do "y".....but it just doesn't work that way. So I flounder.

 

I know this has just been long and rambling and I'm sorry for that. Today has been a really rough day. I ended up hiding and crying for nearly an hour. I just don't know what to do anymore.

I don't have any advice/answers.  My kiddo (DS 8) is not ASD - but I feel like this all the time (ADHD, SPD...stuff). And I could have written this part of your post. So thanks for posting it. You are not alone.  For me, I try and try again, and try to learn and slowly we are making progress.  I'm still waiting on the magic bullet.  And the expert with all the right answers.  But I'm no longer holding my breath.

[texasmama]

I hadn't noticed the new activity on this thread, but you all have me thinking about a lot. I've been very confused lately about all of this. Part of me just really wants to be able to put every behavior into a mental box so I can know what it means and what to do with it. I *know* it doesn't work this way. I know kids don't fit in boxes, behaviors don't come down to one specific dx or cause, and labels don't define the child. But it's hard for me to witness a behavior and not know if it's a)developmentally and age appropriate, b) a child acting up/needing consequences, c) a sensory issue, or d) something else we haven't yet found that puts it beyond their control. I realize most behaviors aren't going to be ONE of those things, but I'm finding it hard to know how to deal with them not knowing where they fall. I feel like I've done a horrible job trying to implement everything we learned through OT. I just don't know how to use the strategies in a practical way. It always makes sense when we're there and the OT is telling me. But then we go home and everything falls apart and I just feel clueless as to what I'm supposed to do. So back to OT we go and they say "did you do xyz?" and I have to say "no, it didn't even cross my mind. When/how was that supposed to happen?" I need "a" happens, you do "x", "b" happens you do "y".....but it just doesn't work that way. So I flounder.

 

I know this has just been long and rambling and I'm sorry for that. Today has been a really rough day. I ended up hiding and crying for nearly an hour. I just don't know what to do anymore.

It is REALLY hard when you have a complex kid who is also young.  It is hard when you have a kid just with ASD who is also young because ASD encompasses so many areas and behaviors.  I will say that although some of my ASD kid's issues became more pronounced during puberty, as he has gotten older I have come to understand him so much better.  I know what he needs from me now.  He has developed some maturity and will listen to me.  He understands that ASD affects him, and he is sometimes willing to listen to me when I advise him to do something in response to an emotional meltdown.  When he was 8 and cried over math several times a week, sometimes all I could do is sit there and cry with him.  He still sometimes cries over math, but he and I recognize what is going on and he is willing to take a break usually versus the years when he would insist that he press on even though he was in such an agitated state emotionally that no learning could take place.  Because I have watched the wave peak and subside for so many years, it is easier to ride it out when it does.  I get less anxious and emotionally involved now.

[texasmama]

Also, during the years when my ASD kid was getting OT and I was getting homework to do with him, I had a difficult toddler, a baby with a birth defect, my dh lost his job, and my mother was dying.  I rarely did homework with him.  I was too overwhelmed.  It all worked out okay.  I do not think he lost out because I did not do these things with him constantly and consistently or even hardly at all.  That is not my proudest admission as a parent, but I did the best I could with the time and energy and resources I had at the time.  

[PeterPan]

CPSTAnne--I think you can add another category to that list.  Behavior is not just sensory (excused) or volitional (needing consequences).  I'm reading the FBA book Lecka recommends, and it is finally saying things you know are true.  Like they'll look at the major reasons for behavior (escape/avoidance, self-reinforcing, communication, etc.).  The book shows you how you go from what you're seeing to an analysis that leads to a plan.  And you can hire a BCBA to do an FBA.  

 

Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)  There's a kindle version for $10, or your library might have it.

 

The Explosive Child was also one of those immediately helpful books.  Stop That Seemingly just goes much farther, with tools to help you see the patterns rather than just reacting.

[Zoo Keeper]

Also, during the years when my ASD kid was getting OT and I was getting homework to do with him, I had a difficult toddler, a baby with a birth defect, my dh lost his job, and my mother was dying.  I rarely did homework with him.  I was too overwhelmed.  It all worked out okay.  I do not think he lost out because I did not do these things with him constantly and consistently or even hardly at all.  That is not my proudest admission as a parent, but I did the best I could with the time and energy and resources I had at the time.  

^^

 

Thank you for sharing this.  I needed to hear it today. 

 

Parenting is hard.

 

Parenting and homeschooling is hard.

 

Parenting and homeschooling a child or two (or three, or...) who does not fit in the box is sometimes like climbing Mt. Everest in the dark while walking backwards. 

 

I'm tired.

 

But still climbing...:)

[texasmama]

^^

 

Thank you for sharing this.  I needed to hear it today. 

 

Parenting is hard.

 

Parenting and homeschooling is hard.

 

Parenting and homeschooling a child or two (or three, or...) who does not fit in the box is sometimes like climbing Mt. Everest in the dark while walking backwards. 

 

I'm tired.

 

But still climbing... :)

Yes.  :)

 

And while some of it is up to us, not all of it is.  Kids grow and learn and mature and develop when given the basic building blocks needed to do so.  I've had to let go of the belief that how this child (or any of my kids) turn out is solely (or even mostly) on my shoulders.  It is not.  I have some spiritual beliefs that help with that.  

[MistyMountain]

If she appeared to have autism on paper then I would think she has it and get another opinion. The two things you mention do not preclude a diagnosis and can be present. Kids with autism can iniate conversation fine in many cases and that is not where the issue stems from.

 

My kids and I all have inactive ADHD and SPD but not autism. I am certain that is all it is for the females. My girls do not fit symptoms of autism and neither do I. My son is more quirky but he does not seem to cross over either. He scored perfectly average with social skills. A social immaturity that is common with ADHD can be very different then the social deficits common with autism. All cases of ADHD and SPD do not cross over. I think they are all related and have brain similarities but you can have some symptoms but not enough to cross over. Others times things are probably more blurry. I do not think there is a clear line in the sand. You can even have executive function delays but have it not be ADHD.

[PeterPan]

 I've had to let go of the belief that how this child (or any of my kids) turn out is solely (or even mostly) on my shoulders.  It is not.  I have some spiritual beliefs that help with that.  

My problem is, my only belief has been optimism, like oh yeah because I believe such and such everything is going to turn out GOOD and PERFECT.  There was never any plan B in my mind for oh we're going to do 8 or 10 years of therapy and he's still going to be questionable for intelligibility and still not have sounds and still have this or that wrong.  Like not variety of life quirkiness, but disabling wrong.  THAT was not in my plan.  Because, of course if we believe, then everything will turn out ROSEY.

[PeterPan]

Pragmatics testing is not accurate until around 10-12 years of age.  Before then, a shocking percentage of kids who get an ASD diagnosis with the ADOS (the gold standard) will PASS, totally pass, a pragmatics eval.  I think it was around 40 or 50%.  It was really surprising.

[Seeking Squirrels]

I was able to get her an OT appt for in a few weeks. We haven't been since May. We were good for a few months, but I've been thinking she needs to go back for quite some time now. I will ask about ABA. We're still quite torn on seeking a second opinion. Even knowing it might be there, we're still not sure it's worth the appts and co-pays for someone to say so. I'm probably not in a good place to be making the decision right now, though. The last two weeks have been especially hard on me and I'm feeling incredibly overwhelmed and frustrated. We're going to break earlier than planned for Thanksgiving and take all week off. Hopefully the break helps a bit and I can talk to her OT.

[Catherine]

Yup. I'd internally labled my own son as shy..but at one point while having him not respond to yet another grocery cashier I realized that at 10 years old, this was something beyond shy. He was diagnosed at 11.

Yes.  My still-not-diagnosed 18 yo still does this.  He waits for ME to respond to a person who initiates a conversation with him.  If I don't, he still, usually, says nothing.  : (