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Finding someone experienced with 2e autism


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I keep reading posts regarding diagnosing autism where people recommend (based on the relevant thread) folks find someone experienced with autism and 2e, or autism in girls, but it makes me wonder how you even start looking for someone like that. Won't everyone say they know what it looks like in those cases just to get your business? What do you do if you don't know anyone else in real life who's gone through this before who you can ask for local recommendations?

Our family therapist (cognitive behavior therapist is her actual title I think) has been seeing us for four years and says my oldest is an aspie, even though that's not a formal diagnosis anymore. She says it's totally up to us if we want a formal diagnosis and gave us some reading material while we think about it. I've read a lot about autism looking different in very smart kids, and don't know if we'd need to see someone different who specializes in that then, or if it's better to stick with her bc she already knows us so well and has seen us so much.

We're really on the fence about getting a diagnosis. We want him to get whatever help he needs but are concerned about stigmas and labels. He's 7. In case it's not clear: we're very new to the field and learning what we can but most likely very unknowledgeable still.

Edited by 4kookiekids
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Here is the thing, a therapist cannot DX ASD. In fact, even when they guess, they are right maybe less than 50% of the time.

 

I see little value of a diagnosis, unless mental health problems where medical treatment can be used is being considered. 

 

I have two that have been diagnosed and another that MIGHT have ASD. I have toyed with looking for a DX. Really, with overlaps of mental health disorders, it might actually help to have an evaluation, but for the purpose of ruling out mental health problems. 

Edited by Janeway
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Ha, I'll answer the totally opposite way!  :)    I think it's outrageous not to get a 2e dc diagnosed, because the dc will be constantly bumping up against expectations and have no adequate answers.  Not getting them diagnosed closes doors for accommodations, services, the RIGHT WORD.  I so love it when the only right word is dumb or awkward or slow or...  You, as a mom, might think it's shielding them, but eventually it will matter.  Might as well have the right words now and decide when to use them.

 

The other thing is, the social skills interventions and options now are OFF THE CHARTS better than they were 10 years ago.  Just because we have so many people with ASD who survived with no interventions doesn't mean there isn't a better way.  My ds is 2E with ASD, and his ABA intervention and social thinking instruction is AMAZING.  It's IQ-appropriate and takes ADVANTAGE of his IQ and is going to OPEN DOORS that wouldn't have been opened to him if he had stayed without a diagnosis.  

 

I would get the evals, no matter what, but I wouldn't get them until he has enough time with a 2nd or 3rd person that those people can see the behaviors you see or the therapist sees and account for them on the behavioral forms.  If people aren't seeing it, they can't put it on the forms, meaning it won't get diagnosed.  For us, what actually helped the most with that was bringing people in our home.  Now the behaviors occur in lots of settings, yes, but if it was say a swim teacher (a preferred thing!) and they saw him for 20 or 30 minutes, they missed all the behaviors before and afterward.  They just saw this brief snapshot.  When we brought a behaviorist and an ABA worker into our home, they could work with him for 3-4 hours and see things happening.  Then it was terribly, terribly obvious.  

 

That's just a problem unique to homeschoolers, and I think it delays diagnosis because someone else isn't seeing the behaviors we are to be able to put them on forms.  Sigh.

 

As far as psychs, that's the 30K question, oy.  Hoagies' Gifted has a list.  If it's glaringly obvious, a hospital or university autism clinic.  Also call around to BCBAs within a 2 hour drive and see who they send people to or get referrals from or suggest.  You can network like that.  Who is paying for the evals?  Prices will really vary with options.

 

I don't think it's cool to leave people without the best available interventions.  Social skills are THE determiner of employability and your ability to hold a job later, not how well he does on math or anything else.  Social skills.  It's THE hill to die on.  Not really.  It's the BATTLE TO WIN.  That's where I'm at with this.  I can mess up on a lot, but I've decided I cannot afford to mess up on social skills for him.  And getting the diagnosis opened the door to the best interventions.  People are AMAZED at the progress in my ds.  You already have significant enough issues that you're seeking help.  There's more help available.  Getting autism-specific help is ROCKET FUEL.  And the diagnosis opens the door for the FUNDING to bring in the best help.  

 

But I'm Tiger Mom on this.  Ain't nobody stopping me from getting the best intervention for my ds.  It's NOT about curing or removing autism.  It's about giving him skills so he can self-regulate, so he can understand.  He's happier, and we're happier.  And frankly, it's about me not getting burnt out in the process.  Because we have the diagnosis, we have funding and can bring in workers, so I can do what I'm good at and have help where I'm not. 

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I would get the evals, no matter what, but I wouldn't get them until he has enough time with a 2nd or 3rd person that those people can see the behaviors you see or the therapist sees and account for them on the behavioral forms.  If people aren't seeing it, they can't put it on the forms, meaning it won't get diagnosed.

 

 

Yes, this is definitely an issue for us, because he rarely has issues when others are around. We've drilled him enough on what sort of behavior we expect - especially around others! - and he's bright enough to catch most of that, so for the most part anyone I discuss the issue with just looks at me crazy-like when I try to talk about it. But then I go to the therapist and talk with her about it (we started going for unrelated reasons, but she sees the whole family), and she's really the only person besides my husband or I to chime in and say, "Yeah, this isn't really normal, here." When he's in Sunday School class or when people come over to the house, he's *generally* more reserved and only occasionally does weird things. I would guess that he's only barely on the spectrum, because he can function pretty well, but I just don't know much about this. And he's very honest that he doesn't act "normal" (HIS version of normal, though) when others are around because he's shy. So it's mostly lucky old me that gets to deal with melt-downs and tears over his inability to make and keep friends and hearing about the same thing for hours and hours each day... lol. :)

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We recently had DS17 evaluated. We've never had any concerns about getting one due to stigmas or labels and I actually don't understand that line of thought at all. After his evaluation we knew and the psychologist who did his testing knew.  And I guess the computer at our insurance company knows. That's it. He can disclose or not to medical providers, teachers or anyone else he's in contact with as he sees fit. Where's the stigma or label in that? And yet as he prepares to enter a four year college or university he has documentation in the event he needs accommodations. As he's gotten older and the social and academic expectations have increased we became more and more aware that he may in fact eventually need some educational accommodations. Thus the evaluation.

 

We didn't push for a diagnosis earlier because we really didn't see the need. When he was younger he had different diagnoses that enabled him to get the therapy he needed (speech and occupational therapy). He had no behavioral problems and was able to socialize adequately. We homeschooled, so accommodating his giftedness wasn't a problem (I'm not one who tends to see even profound giftedness as a problem in need of treatment anyway).

 

We lucked up and found a great psychologist who accepted our insurance. So if you have insurance coverage for psycho-educational testing you may want to start with them and see who's covered. And if you belong to a local homeschool group you could ask around. Chances are somebody's had a child tested or knows someone else who has. Maybe your therapist could recommend someone. Or maybe she's qualified and you'd feel more comfortable with her doing it? You could start by asking her how and what she would test (what questionnaires, IQ tests, etc.).

 

Also, you may need to think about what you want to do with a diagnosis. DS was (is) seeing a psychiatrist for anxiety. She could (and did) diagnose him with very mild autism (ASD-1) for medical purposes. But to get educational accommodations we needed a full psycho-educational evaluation. And for that she sent us to a psychologist.

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Yes, this is definitely an issue for us, because he rarely has issues when others are around. We've drilled him enough on what sort of behavior we expect - especially around others! - and he's bright enough to catch most of that, so for the most part anyone I discuss the issue with just looks at me crazy-like when I try to talk about it. But then I go to the therapist and talk with her about it (we started going for unrelated reasons, but she sees the whole family), and she's really the only person besides my husband or I to chime in and say, "Yeah, this isn't really normal, here." When he's in Sunday School class or when people come over to the house, he's *generally* more reserved and only occasionally does weird things. I would guess that he's only barely on the spectrum, because he can function pretty well, but I just don't know much about this. And he's very honest that he doesn't act "normal" (HIS version of normal, though) when others are around because he's shy. So it's mostly lucky old me that gets to deal with melt-downs and tears over his inability to make and keep friends and hearing about the same thing for hours and hours each day... lol. :)

 

That was my kiddo!

 

FWIW, our family therapist is an ed psych, and she can diagnose with that degree. She's kind of a jack of all trades, and she is known around here as being good with 2e. She's on Hoagies' list, and we were referred to her by people at a local gifted program (we were asking--they weren't singling out our child). If we had not been in family therapy to figure out how to deal with all the quirks and such, I don't think he would have been identified, at least not at that age (almost 9). She brought the issue up, and we had some preconceived notions that made us think it was not the case. Then we went to a homeschool convention and heard Shellagh Gallagher give a lecture on 2e kids. One profile she hit on was ASD. We walked out the session and booked a more in-depth evaluation with our psych--it was like Ms. Gallagher was hitting a point-by-point list of our misconceptions as she gave the profile. The rest is history.

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You might check out the book Different Minds by Dierdre Lovecky. It's great if you can't sleep, and it's also great for seeing 2e issues--it covers 2e ADHD, Asperger's (older criteria), NVLD, etc., and will also look at 2e ASD/ADHD together. Bright not Broken is also a good book. 

 

This is also an older (DSM IV) article, but this is by Shellagh Gallagher about 2e autism. http://www.hoagiesgifted.net/eric/fact/asperger.pdf 

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I second the suggest to get your child evaluated. Thing is, once you have gone through the assessment and perhaps gotten a diagnostic label or two, you still have a choice about each and every possible intervention. You can still decide against particular things that might be suggested.  Likewise, if your child is given special teaching and support with social skills, he still has a choice. He can decide to use his best social skills, which will help him hugely in many situations, but he can also choose not to conform in some situations.  But if you don't pursue anything, you have no choice and he has no choice. 

Also, a word about stigma and labels.  Unfortunately, stigma does exist all too often.  But the thing is, not getting an official diagnosis won't prevent it.  Kids are almost always aware if they are significantly 'different', and other kids absolutely always pick up on it. So basically a kid who is majorly different and goes undiagnosed will have to deal with some others teasing, bullying or shunning him, and he will also have to deal with constant worrying about what is wrong with him and why he can't seem to fit in.  Whereas a kid who has been diagnosed, while still facing the possibility of negative responses from peers, has an explanation for why he is different, and a whole lot of extra support to help him cope. On the other hand, if the kid is only a little 'different' and is able to 'pass', then you have the option of avoiding problems by non disclosure or selective disclosure (it's very rare that you'd actually be obligated to disclose). 

Obviously YMMV, and there will be things about your kid and your family that I don't know. But I would say that 99% of the time, getting a kid assessed results in more options and a more positive outcome. And for 2E, that goes double, simply because giftedness and disability tend to disguise each other, so the 2E kid is unlikely to pick up much special help if you don't actively seek it out.

(NB I grew up as a 2E kid who was never diagnosed or given any support, and I can tell you that even as a kid who could mostly 'pass' and was considered 'successful', it was very difficult. If I had the choice to go back and be evaluated with today's level of understanding, I would choose that in a heartbeat.)

Edited by IsabelC
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I am just going to say, you don't want only an absence of certain behaviors.

 

You want a presence of certain behaviors. You want him to be able to do stuff that is social or whatever.

 

Agreed.  What happened with us was that we were so *used* to his behavior that we had no idea how divergent it was.  His peers are pulling ahead.  Go put him in something he'll FAIL at.  Go put him in a class he CAN'T handle and leave him enrolled there for 9 weeks.  THEN have that teacher fill out the forms.  

 

They do use numerical labels for spectrum now, so ASD1-3, yes.  But I meet ASD3 kids who have had plenty of intervention and are functioning and happy and a pleasure to be around.  And I have n ASD1 kid who, by his own relative's standards, is very hard to be around.  So numbers aren't very helpful.  And you can be kind of a 1/3 split.  That's how my ds is, with level 1 behaviors and level 3 behaviors.  

 

His peers are pulling ahead and he's falling behind by not acquiring skills.  I didn't realize how LOW my expectations were till I brought in outside help.  The outside people (behaviorist, ABA worker, etc.) constantly push on what he can do.  I had no perspective because I was too caught in the middle of the whirlwind of his behaviors. 

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Also, it is possible to get separate evaluations if there isn't anybody near you who has 2E expertise.  With my Ms. 8 we had her ASD assessment done by a specialist ASD diagnostic service, and later arranged the cognitive assessments with a different psychologist.

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As an autistic individual with a high IQ (hah, I almost never get a chance to say the italicized!) I can tell you that my life got 1000% better the day I learned that I might be autistic. Even though I didn't tell anybody. Even though I didn't get a formal diagnosis at that time and therefore didn't get any accommodations. Just knowing why I had trouble made an enormous difference. I wasn't weird, I wasn't stupid, I certainly wasn't lazy - I'm autistic. That means there's nothing wrong with me. My brain works exactly the way it's supposed to work. God, what a relief to know that!

 

I really, really wish my parents - who knew, btw - had discussed this with me when I was younger. I'm sure they thought much the same as you, but they were absolutely wrong.

 

You're worried about stigma? And labels? Even without a diagnosis, I was labelled, and it wasn't pretty. I had so many lectures from teachers and guidance counselors on my "laziness" and my failure to "live up to my potential" that the minute I hear anything even remotely similar to "You're a very smart girl" I start looking for the door. There is nothing good that can follow that sentence! I didn't need tired lectures, I needed help with specific problems I had, help I wasn't getting because the teachers and guidance counselors and all didn't know I needed it.

 

Besides, the magic of diagnoses is that you don't have to reveal them to absolutely everybody. You can selectively reveal them when it's necessary to get an accommodation in work or school, or for testing, but keep quiet about it in the other 99.9% of social situations.

Edited by Tanaqui
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Thanks, guys. I'd asked on a different forum a while back, and gotten so much advice about not labelling him or making excuses for his behavior, still holding him to a higher standard and not accepting "less than," that I've really been struggling. I recognize that I have an unhealthy fear of any diagnosis, even appropriate ones. But I've also been so saddened by things that happen, especially as he gets older and more and more of his social interactions happen without direct supervision on my part. I used to be able to intervene directly and help through a lot of situations, but now it's harder and harder, and the rules he's needing to learn are more nuanced and difficult for me to verbalize. Making a guideline like "Personal space is one arms length away from family members, and two arms length away from others" was relatively straight forward when he didn't pick up on personal space issues himself. Trying to help him understand some of the less obvious ways of interacting and why kids treat him the way they do is more difficult, and enough to break my heart sometimes when he comes to me crying and asking why so-and-so did such-and-such and he just sees stuff so simply he can't make much sense of my answers. If he asks a friend if there's a problem, and they say no but then treat him like there's a problem, he really doesn't get it. And then there's just the issues with talking about the same think just about all day, every day, and the complete melt-downs we have when things don't go according to *his* plans (despite years of trying to teach him to think more flexibly and go with the flow a little better). And my friends tell me I'm crazy and seeing things and how he's mostly normal, but I feel like "mostly normal" isn't cutting it when he's upset all the time and they don't understand how hard we already work on all these little things to make them easier. It'd be one thing if we weren't already giving it pretty much all we have, but to feel like we've done everything we can for the last three years, and things only seem to be getting worse makes me wonder if we shouldn't pursue a diagnosis and appropriate therapies that we've foregone so far. I think I'm rambling and not making a lot of sense. :) Oh well!

Edited by 4kookiekids
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You ARE making sense.  I'm sorry the other forum gave you advice that didn't turn out to be a good fit.  I totally agree, people have where they're coming from.  And, you know, people have how they deal with things and context, and that can change.  If somebody had asked you 3 years ago, would your answer be different from now?  

 

The answer to your question is that there are really good interventions out there now.  You can get a BCBA who has extensive training in social skills, and she/he can come in, work with your dc, maybe bring in some ABA (what I would open yourself to, because it's ROCKET FUEL), and get some changes going.  You've done everything you can alone, and it's not time to blame.  It's time to bring in help, good help.

 

My ds is 2E with ASD1 and combined type ADHD along with multiple SLDs.  He's younger than your ds, yes, but things have changed for him with 5 months of ABA that I didn't think could change.  You'll read all kinds of opinions on ABA, and you have to remember ABA is only an umbrella term for insurance billing.  The key is to find someone who fits your dc, someone you feel comfortable talking with.  My workers never do ANYTHING I would not be willing to do myself.  They are respectful and focused on UNDERSTANDING and making GOOD CHOICES.  No aversion, nothing punitive, nothing out of the blue.  

 

You can't listen to your friends, because they are not with him 24/7.  They are not seeing what you're seeing.  We had to bring workers into our home so they could finally see what we were dealing with.

 

My suggestion is to make the calls, start asking questions, see if you find someone you feel comfortable with.  If you call BCBAs, start there and see if they have psychs they work under or refer to.  Network.  When you find someone who really seems like a good fit (psych, BCBA, whatever), start there.  Phone calls are free, kwim?  Sometimes you just have to make the calls, take a step, ask for help.  You can't get help if you don't ask for help.  They can't come in your home and help you if you don't let them.  Wishing things would change won't make for change.  

 

You're RIGHT to want some help and intervention, and you're NOT crazy.  If your ds were getting the type of intervention my ds is, you'd probably be phenomenally happy.  But you can't tell what is available till you start calling around.  It takes a while to find people, with one connection leading to the next till you find the right people to make your team.  So just start somewhere, start asking, and don't stop till you have what you need.  There IS the kind of help you're wanting, and it's out there to be found.  :)

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Deanna, your last post makes complete sense. However, I think one of the problems with the previous advice you received lies in the fact that some people perceive a false dichotomy. A choice between either getting an assessment, and then doing a whole lot of stereotyped things that go with that (the 'my-kid-has-a-label package'), or avoiding all of it.  But in reality, there is no such either/or. Receiving a diagnosis does not oblige you to do anything further. It's completely up to you (and, later on, your child himself) whom you want to tell about the label, in what areas you might want to make allowances / accommodations (vs maintaining high expectations), and what therapies or supports, if any, you want to avail yourself of. 

Edited by IsabelC
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So I talked with our psychologist (who we've been with as a family four 3-4 years already), and she says she does autism evals all the time, so there's no reason we'd need to see someone who specializes in ASD for an eval. Part of me really likes this idea, because she knows us well, and there's the whole issue I mentioned above of him being able to function relatively well much of the time (so I feel like having someone who's had time to see his ups *and* his downs is valuable, especially since we don't have school teachers involved who can give this kind of feedback from outside the family). But I confess that I'm still a littler nervous, because it's not her specialty. Is that a real reason to be concerned, or am I overthinking things? How much of getting a good eval comes from it being your specialty (vs. having worked as a child psychologist for 40+ years and all the experience that comes with that)?

 

I confess that I have no idea what an evaluation looks like. Do we just answer a bunch of questionnaires? We took the AQ test online (I know it's not a real diagnostic tool or anything), and he scored relatively high on it (36), but the answers my husband and I felt most accurately reflected him weren't always the answers he thought reflected himself (e.g., he says he'd always rather be with people than by himself, but I know for a fact that that really depends on if others are playing the "right" way or not...) I don't know why I feel so nervous about this all. Just fear of the unknown, I guess.

 

Are there any particular things I should be aware of or think to ask or discuss? As they relate to ASD in general or as they relate to ASD + very intelligent or anything else? Psych made sure to point out that we'd just have to start with some testing, bc though she's said she suspects he's on the spectrum, you just can't really know until you dig a bit deeper. I'm not sure why she said that, since it seems obvious, so maybe I just missed her real point in saying it! :)

 

I think I've started to stress out about being able to justify why we're having him evaluated and I've started making mental lists of (instances where we melt down over minor things and just can't recover) and (instances where we've really struggled socially) and so on, and I don't know if that's just me stressing out or if those sorts of examples are actually helpful in anyway (does it just stress me out more thinking of all the asd tendencies he seems to have, regardless of the fact that the eval may show he's not autistic at all?). I feel like this is consuming my thoughts, and I really appreciate all the time and patience you all have shown me in answering questions from a newbie that you've probably answered for others a million times already. :) So Thank you!

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I don't know about the ASD part, but the 2e stuff can be a bit tricky to tease apart.  Do you know whether she has assessed many gifted kids?  For example, it's always a clue to me here on the forum that a psych may not have a lot of 2e experience when I read a poster's description of the meeting where the psych commented on the rarity of the gifted kid's score, as if they've only rarely seen such a thing, if ever.  Or, the psych who doesn't mention 2e at all when there's gigantic score scatter and at least one really high section or really high and low subsections that got averaged into a mediocre overall score.

 

I totally get the comfort factor of going with the familiar psych - not to mention that you might have fewer detailed forms to fill out with a person you've already seen.

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I don't know how many gifted kids she's seen (I haven't had opportunity to hear her comment on test results, since we've never done testing before), but she has made it no secret that she knows my kids are incredibly bright (and that's a contributing factor to the issues that originally started us in seeing her).

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Well to *me* it sounds screwy to say they've known him for 4 years, had multiple therapy sessions with him, and don't already know if he's on the spectrum or not.  People I take my ds to who work with spectrum a lot can tell.  They hang with him, interact with him, and it's quickly obvious.  It's only novices and people with less experience who wonder.  That would be like school aides, SLPs, teachers, things like that.  But when you get in with people who work with a LOT of spectrum (run a school, run a social skills group, it's their gig and they work with it a lot), for them it's totally obvious.

 

So I have no clue how to interpret your psych.  It's a hoop to jump through.  Your ds is not going to answer forms to determine if he's on the spectrum or not.  Well maybe for teens they do something?  In general they want to see behaviors occurring in multiple environments, meaning they want confirmation that the behaviors occur with you AND with others in other places.  So usually there are questionaires (GARS, etc. etc.) that are given to multiple people.  

 

That means if you haven't had him with enough other people that they can see and mark those behaviors, the usefulness and accuracy of the results is low.  (I'm being uber polite here.)  It's the hazard of homeschooling.  

 

Probably the psych will be fine.  They hedge like that.  They ALL hedge like that.  There must be a reason, but it's just angst producing hedging.  She probably already knows the outcome, but she's just saying yeah we'll line up the ducks.

 

So yes, I would agree that someone who has spent hours and hours with him is in a good position to have seen lots of evidence in behaviors and to have connected dots that the behaviors occur in multiple environments.  That makes her a logical person to do the eval.  

 

The only major caveat or reason to consider looking elsewhere would be if you need some kind of hospital eval for insurance coverage, to help you qualify for an IEP (sometimes schools prefer multi-factored evals like a hospital will do), etc.  So that's really a question of what you want to DO with the results and who's paying for it.  If this eval will get paid for, no problem, and it jumps all the hoops you need, you're good to go!  :)

 

It's good to have that sorted out.  And, you know, sometimes providers overstate what they can do.  You like working with this woman?  Is her advice or insight helpful?  That's what determines how it goes, not just the name on the door.  Having a lot of background and the freedom to say things could be pivotal.  Does she have any biases that could cause problems?  

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You can ask her what tests she would run and then do a little research to see if you think it might be sufficient.

 

The GAR is a kind of checklist, where the parent lists how often you see certain behaviors.

 

The ADOS is often called the "gold standard." The tester does an observation of the child while asking them to do certain tasks and then scores the observations.

 

The ADI-R is another checklist, I think, but is conducted as a parent interview.

 

You can search for more information about these and other possible tests online. There are pros and cons to each, in my opinion.

 

The only one we have experience with personally is the GAR (which has since been revised). DH and I found it really hard to quantify some things -- "do you think we should circle the 2 or the 3?" -- and it didn't give us a chance to verbalize all of our concerns, since it was just a checklist.

 

We had someone else say that they would run the ADOS, and we felt uncertain about that, because DS's behaviors vary. We can't count on him displaying certain behaviors during the observation period, and there are some behaviors that he used to have that he has since outgrown.

 

If we ever proceed with full autism evaluations, we would like to make sure that the screeners use multiple methods and are really willing to listen to DS's history and our parental concerns, instead of just relying on a particular score on whatever test they prefer.

 

Since your psychologist knows him well, she might be a good choice. But I'd ask what tests she uses and then decide if you consider that sufficient.

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My interpretation of the psych is she is putting the ball in your court.

 

I think they think it is better if you work through feelings of discomfort and ambivalence on your side first.

 

Also I think it sounds professional.

 

But isn't it irritating?

 

On the whole "what do you think" thing, I think a lot of people follow the parent's lead in a lot of ways. You aren't sure and aren't seeking a diagnosis? They are not sure either. You are sure? Oh, they see it, too. I don't know how much of this is they have a private opinion, and how much they are just comfortable either way or don't have a strong personal investment and are fine either way. For a lot of things, going by individual characteristics of a person, the diagnosis is not such a factor.

 

It matters but it also doesn't matter.

 

But I think bottom line -- professionals sometimes have a choice between being pushy or not being pushy. There are many huge drawbacks to pushy. For being not pushy, they might mention things but respectfully leave things to the parents, or patiently wait for the parents to think things through.

 

But then it can feel like a guessing game like maybe they don't think it is needed.

 

I think though they think some things are more of a hint and less ambivalent than it comes across.

 

But I think knowing that for a lot of sensitive people they think "pushy=bad" and so they want to stay far away from the pushy area, is a lot of context. (I mean they think insensitive professionals are pushy, and that it is bad, and they want to not be that way.... think of many stories about professionals who are insensitive ---- they want to really stay far from being that way.)

 

But they don't say "hey, I am being not-pushy bc I am a good professional person" so it is hard to know that context if it is there.

 

So they do like.... a first mention, give it time to sink in, maybe bring it up gently again, etc.

 

If you have expressed ambivalence or qualms about labeling, then they may wait for you to show you are in a different place on those issues.

 

Bc if they did push you and you weren't ready, you might retreat from any mental health services, and that is a concern too, I think, and they don't want to push people away by being pushy.

 

But I am SO with you on feeling like there are not straight answers sometimes and not knowing how to interpret that.

 

My answer now is -- they are afraid I will cry a ton, or flip out and blame the messenger (aka not see them anymore, pull my child from receiving interventions, that kind of thing). So they are feeling me out.

 

So then I need to come across like "okay, I won't cry a huge amount or flip out." Like -- okay, I have worked through some emotional issues, and I am ready for discussion.

 

As a general rule though, they do a mention first, look for the reaction, and if the reaction is upset or surprised, they stay at mentions until I seem like I meet them with "you know, since you mentioned that, I have thought about it and noticed some things, too, and I think....."

 

I think it is irritating sometimes bc it can be very vague to me and hard to interpret, but it is better than somebody being bossy or pushy, or not giving me time to think that I may actually need. Maybe I need the chance to talk about it with my mom, my husband, the forum here, or I want to read a little, etc. I do not do well when people do not give that time, so I think that is the good side.

 

Really -- I think they want it to be your thing, that you take ownership of. Not like it is their thing or you leave it up to them. They think it is worse for treatment. They think it is better when parents direct things like this, like you will be a more active participant.

 

And, I have also had things where I am saying "can't you just tell me now?"

And they say they have a guess or possibility but as they haven't actually pursued it they can't tell me the result already. It will seem to me like they should just know, but I think they really do have to do the things to know. One to be professional, but also, many things come across one way but then you see the results and see another side. So I think it is like, okay, so they need to actually do the tests or observations sometimes. Other times they may have the information they need already.

 

So I think I take it at face value that it is necessary to go through the process and see where

the process leads.

Edited by Lecka
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But I confess that I'm still a littler nervous, because it's not her specialty. Is that a real reason to be concerned, or am I overthinking things? How much of getting a good eval comes from it being your specialty (vs. having worked as a child psychologist for 40+ years and all the experience that comes with that)?

 

I'm guessing it's not much different than medical doctors--sometimes you do need a specialist, but a general practitioner with 40 years of experience is going to have seen a LOT of things and have the experience to handle a lot of them. And have the benefit of already knowing you (him).

 

You might also consider how hard it may be to find someone who does specialize in 2E kids, and how long the wait may be to see that person.

 

 

 

 I confess that I have no idea what an evaluation looks like. Do we just answer a bunch of questionnaires? We took the AQ test online (I know it's not a real diagnostic tool or anything), and he scored relatively high on it (36), but the answers my husband and I felt most accurately reflected him weren't always the answers he thought reflected himself (e.g., he says he'd always rather be with people than by himself, but I know for a fact that that really depends on if others are playing the "right" way or not...)

 

For DS17's recent evaluation DH and I went in for the intake appointment and spent over an hour going over DS's history and answering questions. She sent us home with a slew of questionnaires for DH and I to fill out (a separate copy for each of us, not to do collaboratively) and also several for DS. Before we scheduled the appointment I'd had DS do the AQ and he scored quite high on it. From what I understand it really is quite reliable. Also, my understanding is that many people with autism do in fact want to socialize. Sometimes a lot. They just don't know how to go about it. So I think it's possible he does prefer to be with people.

 

 

 

I think I've started to stress out about being able to justify why we're having him evaluated and I've started making mental lists of (instances where we melt down over minor things and just can't recover) and (instances where we've really struggled socially) and so on, and I don't know if that's just me stressing out or if those sorts of examples are actually helpful in anyway (does it just stress me out more thinking of all the asd tendencies he seems to have, regardless of the fact that the eval may show he's not autistic at all?). I feel like this is consuming my thoughts, and I really appreciate all the time and patience you all have shown me in answering questions from a newbie that you've probably answered for others a million times already. 

 

 

 I'd been pretty sure since he was a preschooler than DS was at least bumping up against the spectrum and that he was gifted in at least some areas. But still . . . when we actually started the process of an official diagnosis a few months ago I was SO nervous and stressed. I had all the same thoughts you're having. I worried that I was over-reacting in even scheduling the evaluation (even though we had a psychiatrist saying she thought he was on the spectrum!). I worried that maybe he wasn't gifted--'cause doesn't every parent think their kid is gifted? Aren't we all gifted in some way (I think so)? I worried that we'd made a huge mistake in waiting so long for the evaluation. I worried if the results would be accurate or not. It was like no matter how well *I* knew what was going on it was still a really big deal making it official and quantifying things. I worried making things official would change things. I worried it would change him or worry him or give him an ego to find out how smart he is or crush him to find out he was on the spectrum. But I was more worried about what would happen if when he goes to college he hits a wall and needs accommodations and we had to scramble for them. So we pursued the evaluation. And the waiting was pretty stressful for me (I don't think he thought about it much at all). I did more than make mental lists--I created a document to note everything I wanted to mention at our intake appointment. Writing it out at least helped me feel like my thoughts were organized. Now we're two weeks out and have wrapped our minds around it and . . . we're pretty much back to normal and I've realized an official diagnosis doesn't really change much at all. DS was pleased to find out he's gifted and (I think) relieved to know he is on the spectrum. We have enrolled him in a social skills class and some private therapy to learn to deal with his anxiety and (maybe) some of the social issues, but other than that . . .we're all plugging along as normal. That's my long winded way of saying it's okay (and probably perfectly normal) to feel nervous and conflicted.  :grouphug:

Edited by Pawz4me
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I'd been pretty sure since he was a preschooler than DS was at least bumping up against the spectrum and that he was gifted in at least some areas. But still . . . when we actually started the process of an official diagnosis a few months ago I was SO nervous and stressed. I had all the same thoughts you're having. I worried that I was over-reacting in even scheduling the evaluation (even though we had a psychiatrist saying she thought he was on the spectrum!). I worried that maybe he wasn't gifted--'cause doesn't every parent think their kid is gifted? Aren't we all gifted in some way (I think so)? I worried that we'd made a huge mistake in waiting so long for the evaluation. I worried if the results would be accurate or not. It was like no matter how well *I* knew what was going on it was still a really big deal making it official and quantifying things. I worried making things official would change things. I worried it would change him or worry him or give him an ego to find out how smart he is or crush him to find out he was on the spectrum. But I was more worried about what would happen if when he goes to college he hits a wall and needs accommodations and we had to scramble for them. So we pursued the evaluation. And the waiting was pretty stressful for me (I don't think he thought about it much at all). I did more than make mental lists--I created a document to note everything I wanted to mention at our intake appointment. Writing it out at least helped me feel like my thoughts were organized. Now we're two weeks out and have wrapped our minds around it and . . . we're pretty much back to normal and I've realized an official diagnosis doesn't really change much at all. DS was pleased to find out he's gifted and (I think) relieved to know he is on the spectrum. We have enrolled him in a social skills class and some private therapy to learn to deal with his anxiety and (maybe) some of the social issues, but other than that . . .we're all plugging along as normal. That's my long winded way of saying it's okay (and probably perfectly normal) to feel nervous and conflicted. :grouphug:

Yes!! This is exactly how I've been feeling! It's such a relief to hear it come from someone else.

 

 

Ok. I guess we're gonna do this then! My husband sees things much more simply than I do: An eval can only help. It's up to us to decide what to do with the results, but more options can only be a good thing. And we work our way out by starting with resources (like the psych) we already have. I wish sometimes I saw things as simply as he does. :)

 

 

Thank you all so much!

Edited by deanna1ynne
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Well to *me* it sounds screwy to say they've known him for 4 years, had multiple therapy sessions with him, and don't already know if he's on the spectrum or not.  People I take my ds to who work with spectrum a lot can tell.  They hang with him, interact with him, and it's quickly obvious.  It's only novices and people with less experience who wonder.  That would be like school aides, SLPs, teachers, things like that.  But when you get in with people who work with a LOT of spectrum (run a school, run a social skills group, it's their gig and they work with it a lot), for them it's totally obvious.

 

I should've clarified that for the last 2ish years, we've been seeing the psych with one of my other children. So she's seen us as a *family* for that long, and she still talks with us about the other kids when we bring up issues, but the focus has been on a different child in recent years.

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My interpretation of the psych is she is putting the ball in your court.

 

I think they think it is better if you work through feelings of discomfort and ambivalence on your side first.

 

Also I think it sounds professional.

 

But isn't it irritating?

 

On the whole "what do you think" thing, I think a lot of people follow the parent's lead in a lot of ways. You aren't sure and aren't seeking a diagnosis? They are not sure either. You are sure? Oh, they see it, too. I don't know how much of this is they have a private opinion, and how much they are just comfortable either way or don't have a strong personal investment and are fine either way. For a lot of things, going by individual characteristics of a person, the diagnosis is not such a factor.

 

It matters but it also doesn't matter.

 

But I think bottom line -- professionals sometimes have a choice between being pushy or not being pushy. There are many huge drawbacks to pushy. For being not pushy, they might mention things but respectfully leave things to the parents, or patiently wait for the parents to think things through.

 

But then it can feel like a guessing game like maybe they don't think it is needed.

 

I think though they think some things are more of a hint and less ambivalent than it comes across.

 

But I think knowing that for a lot of sensitive people they think "pushy=bad" and so they want to stay far away from the pushy area, is a lot of context. (I mean they think insensitive professionals are pushy, and that it is bad, and they want to not be that way.... think of many stories about professionals who are insensitive ---- they want to really stay far from being that way.)

 

But they don't say "hey, I am being not-pushy bc I am a good professional person" so it is hard to know that context if it is there.

 

So they do like.... a first mention, give it time to sink in, maybe bring it up gently again, etc.

 

If you have expressed ambivalence or qualms about labeling, then they may wait for you to show you are in a different place on those issues.

 

Bc if they did push you and you weren't ready, you might retreat from any mental health services, and that is a concern too, I think, and they don't want to push people away by being pushy.

 

But I am SO with you on feeling like there are not straight answers sometimes and not knowing how to interpret that.

 

My answer now is -- they are afraid I will cry a ton, or flip out and blame the messenger (aka not see them anymore, pull my child from receiving interventions, that kind of thing). So they are feeling me out.

 

So then I need to come across like "okay, I won't cry a huge amount or flip out." Like -- okay, I have worked through some emotional issues, and I am ready for discussion.

 

As a general rule though, they do a mention first, look for the reaction, and if the reaction is upset or surprised, they stay at mentions until I seem like I meet them with "you know, since you mentioned that, I have thought about it and noticed some things, too, and I think....."

 

I think it is irritating sometimes bc it can be very vague to me and hard to interpret, but it is better than somebody being bossy or pushy, or not giving me time to think that I may actually need. Maybe I need the chance to talk about it with my mom, my husband, the forum here, or I want to read a little, etc. I do not do well when people do not give that time, so I think that is the good side.

 

Really -- I think they want it to be your thing, that you take ownership of. Not like it is their thing or you leave it up to them. They think it is worse for treatment. They think it is better when parents direct things like this, like you will be a more active participant.

 

And, I have also had things where I am saying "can't you just tell me now?"

And they say they have a guess or possibility but as they haven't actually pursued it they can't tell me the result already. It will seem to me like they should just know, but I think they really do have to do the things to know. One to be professional, but also, many things come across one way but then you see the results and see another side. So I think it is like, okay, so they need to actually do the tests or observations sometimes. Other times they may have the information they need already.

 

So I think I take it at face value that it is necessary to go through the process and see where

the process leads.

This was good food for thought, bc I've been VERY hesitant to pursue any evals in the past and VERY reserved when it came to labels, diagnoses, etc. (Flat out told her I didn't want any of that several years ago...)

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Everything you are concerned about is normal. You will be okay!

 

As for filling out the forms, if there was not a place to put a subjective answer, or if we had ANY question about what an option meant, we made notes so that we could ask. We also noted anything "extra" we felt was important for items that were not cut and dry to us. Those observations were taken into consideration for the overall diagnosis. 

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Nevermind. I'm deleting this post because I wrote it in frustration and should've just taken the morning off to breathe and enjoy my kids. (Not frustration with anyone here - just with myself and my child.) So I don't think that kind of negativity is helpful here. :)

Edited by deanna1ynne
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Some of that stuff went along with ASD for my kiddo, but it's not definitive for ASD (several things come to mind--perfectionism, ADHD lack of planning ability, etc.). 

 

It sounds like it's compounded itself over time, and that can be hard to sort out when you see all those variations and pieces emerging over time. Does your therapist have suggestions? I know he's not the one seeing the therapist, but maybe these specifics have come up.

 

It sounds like some anxiety is at play (par for the course with ASD a lot of the time). It might not sound like what you think of as anxiety, but I am guessing it has an anxiety component.  

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You can ask her what tests she would run and then do a little research to see if you think it might be sufficient.

 

The GAR is a kind of checklist, where the parent lists how often you see certain behaviors.

 

The ADOS is often called the "gold standard." The tester does an observation of the child while asking them to do certain tasks and then scores the observations.

 

The ADI-R is another checklist, I think, but is conducted as a parent interview.

 

You can search for more information about these and other possible tests online. There are pros and cons to each, in my opinion.

 

The only one we have experience with personally is the GAR (which has since been revised). DH and I found it really hard to quantify some things -- "do you think we should circle the 2 or the 3?" -- and it didn't give us a chance to verbalize all of our concerns, since it was just a checklist.

 

We had someone else say that they would run the ADOS, and we felt uncertain about that, because DS's behaviors vary. We can't count on him displaying certain behaviors during the observation period, and there are some behaviors that he used to have that he has since outgrown.

 

If we ever proceed with full autism evaluations, we would like to make sure that the screeners use multiple methods and are really willing to listen to DS's history and our parental concerns, instead of just relying on a particular score on whatever test they prefer.

 

Since your psychologist knows him well, she might be a good choice. But I'd ask what tests she uses and then decide if you consider that sufficient.

 

So she gave us the GARS3, SRS2, and BASC3 to start filling out. Anyone have experience or thoughts on these?

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I have filled out a BASC 3 for my son for school. I don't think it meant much for him, they just wanted it as a record. He already was getting services consistent with the scores (like -- he was already getting speech therapy). I think it has sections on things where we might add some IEP goals based on low score areas, if there was something that came up that way.

 

I don't know too much about it, but I have filled it out!

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They're normal things to be doing.  I would talk with her if you don't understand what the statements on them mean.  If you write out notes as you fill them out, so the person can see what you were thinking on ones where you were between numbers, that can be good.

 

Did she give you copies of the GARS or BASC for others to fill out as well?  Make sure those people have SEEN the behaviors that you see.  If they haven't, they won't get marked, kwim?

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They're normal things to be doing.  I would talk with her if you don't understand what the statements on them mean.  If you write out notes as you fill them out, so the person can see what you were thinking on ones where you were between numbers, that can be good.

 

Did she give you copies of the GARS or BASC for others to fill out as well?  Make sure those people have SEEN the behaviors that you see.  If they haven't, they won't get marked, kwim?

That makes sense. There were some that I wasn't sure how to answer. She asked if there were people who know him well enough to have seen the behaviors, and there is only one person I could think of who I thought *might* know enough to do it (she's been my best friend since before he was born and our kids are friends and play together at least once a month, but sometimes once a week). So the psych gave us an extra set for her to fill out, but I told her clearly that if she doesn't feel like she knows him well enough to fill them out, once she gets into them and sees what they ask, then there's no pressure to answer and she can just quit and we won't take her forms into consideration. We have a play date tomorrow for the kids, so I ran the forms over tonight so she can look them over and maybe if she has questions about particular statements, she can observe tomorrow while the kids play to help her answer better. It's a little tough not having more folks who know him and are around him day-in/day-out when homeschooling in this situation. Oh well! We'll see. :)

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Here is the thing, a therapist cannot DX ASD. In fact, even when they guess, they are right maybe less than 50% of the time.

 

I see little value of a diagnosis, unless mental health problems where medical treatment can be used is being considered. 

 

I have two that have been diagnosed and another that MIGHT have ASD. I have toyed with looking for a DX. Really, with overlaps of mental health disorders, it might actually help to have an evaluation, but for the purpose of ruling out mental health problems. 

Maybe it's just my state, but I can't imagine not getting a dx. Having a dx for autism, anything SPD, or similar opens a ton of doors here. We are able to keep Early Intervention services, as long as they are first accessed prior to age 3, after age 3 - with a dx. Our state has TEFRA (state medicaid for children with chronic conditions and it has nothing to do with family income, so it's available for any dx-related services and/or therapies - including genetic testing in our case, and it doesn't matter at all what your income is).

The state will also provide several hundred dollars every month to be used for something dx-related (dance classes for OT needs, sensory equipment for the home for an SPD child, etc) for qualifying children.

And with a dx, our private insurance is willing to pay out for more therapies than without a dx.

Edited by AimeeM
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Maybe it's just my state, but I can't imagine not getting a dx. Having a dx for autism, anything SPD, or similar opens a ton of doors here. We are able to keep Early Intervention services, as long as they are first accessed prior to age 3, after age 3 - with a dx. We have TEFRA (state medicaid for children with chronic conditions and it has nothing to do with family income, so it's available for any dx-related services and/or therapies - including genetic testing in our case, and it doesn't matter at all what your income is. The state will also provide several hundred dollars every month to be used for something dx-related (dance classes for OT needs, sensory equipment for the home for an SPD child, etc) for qualifying children.

And with a dx, our private insurance is willing to pay out for more therapies than without a dx.

 

 

I've wondered about this, bc I just got insurance info for next year and one of the limits was 60 therapy sessions (OT, speech, physical all combined), though it said that, for some conditions, limits may not apply. And it made me wonder how that all will come out in the wash!

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I've wondered about this, bc I just got insurance info for next year and one of the limits was 60 therapy sessions (OT, speech, physical all combined), though it said that, for some conditions, limits may not apply. And it made me wonder how that all will come out in the wash!

So, with a prescription and a dx, our insurance covers all ABA recommended at, like, 80%. Tefra (the state medicaid that isn't income dependent that I mentioned) will pick up the entire rest of the tab for ABA. Anything private insurance doesn't cover (percentage-wise or at all) is covered by Tefra, as long as it is related to the offical dx. 

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That makes sense. There were some that I wasn't sure how to answer. She asked if there were people who know him well enough to have seen the behaviors, and there is only one person I could think of who I thought *might* know enough to do it (she's been my best friend since before he was born and our kids are friends and play together at least once a month, but sometimes once a week). So the psych gave us an extra set for her to fill out, but I told her clearly that if she doesn't feel like she knows him well enough to fill them out, once she gets into them and sees what they ask, then there's no pressure to answer and she can just quit and we won't take her forms into consideration. We have a play date tomorrow for the kids, so I ran the forms over tonight so she can look them over and maybe if she has questions about particular statements, she can observe tomorrow while the kids play to help her answer better. It's a little tough not having more folks who know him and are around him day-in/day-out when homeschooling in this situation. Oh well! We'll see. :)

 

The best case scenario is when they've come to you saying they've seen behaviors that concern them.  But yeah, a good long day together, like more time than usual, time when he's in transition, time when he's likely to have behaviors...  

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The best case scenario is when they've come to you saying they've seen behaviors that concern them.  But yeah, a good long day together, like more time than usual, time when he's in transition, time when he's likely to have behaviors...  

 

 

She has a son who's mostly in the same boat, so we've talked about it alot. I'm not sure what she's seen and what she hasn't. I'm interested in seeing what she has to say. Is it wrong to look at her eval before turning them in?

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No, it is not wrong.

 

For me part of the reason is to see what is the same and different with different people/settings.

 

For example, my son's speech level lags by about a year when he is not with me and not at home.

 

This has been going on for a couple of years, and it seems to be just how it is to some extent, but if the lag changes then it would be a question as to "why?" Bc we don't like that the lag is there, but while it is stable, then at least it is not getting worse.

 

Also things like -- if there is a lot more repetitive behavior with one form, does that mean he needs more supports in that setting?

 

If he scores higher in social areas with one form, what is going well and how can we add that to other settings?

 

I would fill out your form first though so you don't second-guess answers.

 

Edit: we know my son has issues here and there with generalization, so we look for that with forms like this. If the forms are pretty similar maybe they will think there is less need to check for generalization. But we are always looking for that with observation forms.

Edited by Lecka
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And again, if you're seeing behaviors in your settings and your friend is not, it's valid to want to know why.  Maybe it's too brief or non-preferred or...  And honestly, some people are just oblivious.  Or the make excuses.  Or they don't want to offend you.  Or they have this like super-ABA-compatible personality to them.  Or in those settings you're compensating.  

 

Like if you filled out forms on my ds based on how he is in a swim class, just IN THE CLASS, you'd get nothing.  But if the person filling them out how to take him to class, get him in the building, watched him interact with the other kids, and had to deal with him afterward, TOTALLY DIFFERENT!  So our first time, we were idiots and had the swim teacher fill out.  Nice lady, but she didn't see the behaviors.  They were happening before and after.  She saw things during, but not enough.  It was highly preferred, highly structured, repetitive (dependable, lowering anxiety) and she just wasn't seeing the behaviors.  

 

Even in church we had the same thing.  The behaviors were occurring in transitions.  And we had people blowing things off.  They were seeing behaviors (repetitive things like flipping light switches, etc.), but they just didn't realize what they were seeing.  They were making judgments and blowing things off instead of just reporting the behaviors.  We eventually got it sorted out, but I'm just saying some people see more than others or are in the situations where the behaviors occur.  So make sure the behaviors occur!  Make sure the friend is watching your kid.  Let her see him melt down.  Remove supports and things you do that prop him up.  Whatever makes him stim or have behaviors, let happen.  

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Part of my problem at one point was having no idea how much support I was providing. No idea at all.

 

If you know you are providing supports, maybe documenting your supports is possible without removing them.

 

I don't know.

 

I would never have realized what supports I was providing, until I had it pointed out to me by someone we saw after my son was already diagnosed.

 

I don't know if you are at a point where you cannot have an accurate result, or not, or if maybe it turns out you already can have an accurate result.

 

There have been some homeschool moms here who are truly providing but such a level of support and choosing activities in a way that nobody sees anything, though.

 

I think this is something I would ask about with the family therapist, it may be something where he or she says "don't worry" or maybe he or she will have some suggestions for you. I think if the family therapist doesn't think it is an issue for you, don't worry about it. And if so -- problem solve with the family therapist. I think it is something where it is nice to have a family therapist!!!!!

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Part of my problem at one point was having no idea how much support I was providing. No idea at all.

 

If you know you are providing supports, maybe documenting your supports is possible without removing them.

 

I don't know.

 

I would never have realized what supports I was providing, until I had it pointed out to me by someone we saw after my son was already diagnosed.

 

I don't know if you are at a point where you cannot have an accurate result, or not, or if maybe it turns out you already can have an accurate result.

 

There have been some homeschool moms here who are truly providing but such a level of support and choosing activities in a way that nobody sees anything, though.

 

I think this is something I would ask about with the family therapist, it may be something where he or she says "don't worry" or maybe he or she will have some suggestions for you. I think if the family therapist doesn't think it is an issue for you, don't worry about it. And if so -- problem solve with the family therapist. I think it is something where it is nice to have a family therapist!!!!!

 

 

I honestly don't know. I do prop him up a lot, I think, because I'm there all the time and can see a problem well before it erupts and then intervene to diffuse it altogether (most of the time, at least, so that meltdowns rarely occur in public). Also, we have fewer problems at playdates because it's generally time where I don't have many expectations of him (chores, schoolwork, etc.) and he's allowed to do anything he wants to (within reason, of course). The meltdowns usually happen at home or at the end of the playdate, when it's time to go home.

 

The therapist listens pretty good. And at one point when I spoke with her yesterday, I even mentioned that I feel silly for getting all worked up over this (I definitely started crying in the office when trying to explain how frustrating and difficult family life has been lately) and I haven't talked about it with my friends much, but all but one friend (the one who I did give forms to) told me I was being ridiculous (I talked with two others: one told me that none of this would have become a problem if I hadn't homeschooled, and the other told me that kids are kids and everybody has problems and there's no reason to get doctors involved looked for labels and excuses - somehow, I wasn't really encouraged by either answer). I mentioned that, unlike some issues I've had with my daughter, it's hard for me to list one or two big things that disrupt our day; it's like a thousand small things every day. And the therapist reassured me that, even from the little things that I was describing that happened yesterday morning (our appointment was at 9 am), it's ok to be upset that stuff like that is happening all the time, and it's ok to want to identify what's going on and get help. And whatever is going on, it's not trivial and she agreed that he needs more help than he's getting now.

 

I think I'll let my friend fill them out, but then look at them and talk with her (not to change answers of course, but just to hear more of her thoughts about them). The therapist knew going in that my friend may not know him well enough to give good feedback. She wasn't going to give an extra copy of the forms for her initially, but then I thought we might as well see, and my friend promised to be honest if she doesn't feel like she has enough experience to fill them out well. So we may or may not end up using her feedback. Fingers crossed!

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I got that negative response from some people, too.  I can understand it more now, but at the time it was really not helpful.

 

I think it would be sure be great if no kids had any kind of issues that could not be fixed by better parenting or the power of positive thinking, but it is not the world I live in anymore.

 

It is better since my son is diagnosed and I am meeting new people already through that process and with him diagnosed.  It is just part of who I am from when I first meet people, which is pretty easy.

 

There are some people I ended up never going back and telling, just b/c ---- I don't know, it seemed like it would not go well.  It seemed like it would go like "so, remember how you thought it was stupid for me to look into autism, and how it is bad to label kids?  Well, I am doing it and it is what I do now."  I just never really went back to talk to some people (I quit going to a Bible study I had been going to, quit going to mom days at the park with those people). 

 

But I think if I met them now, and I started with "yes, this is what I do," it might be just fine.

 

It is just one of those things -- I think it makes people very uncomfortable, especially when they have kids of a similar age, and the kids are young enough that there are still a lot of comparisons.

 

I think it is just uncomfortable.

 

But then kids get older and it turns out that some kids have some variation from average, and then parents get used to that idea, and then it just gets more acceptable.

 

That is what I feel like, at least. 

 

I think a lot of it is the difference between pre-school and Kindergarten.  I have heard pre-school parents confidently state that "everyone does this" or "nobody does that" at their child's pre-school.  It is a select group of kids, some kids may not be going, the kids are not as likely to tell their parents so much, and parents whose kids do have some issue may not really know the details and/or may not be sharing it with anybody.  

 

But then in K suddenly there are kids that were not there in pre-school.

 

My own son went to special needs pre-school, so he was not at any church pre-school (he was for a little while, but I took him out and put him in the special needs pre-school).  But then in Kindergarten, he was not segregated into another location anymore.

 

I think people can get used to it more as they meet more people. 

 

I found a huge difference between parents with an older child (my older son's age) who had already been through more life experiences along these lines, and parents whose oldest child was the same age as my son. 

 

Anyway -- that is what I think to some extent.

 

It is very frustrating to be doing something hard and get such negative feedback, though. 

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  • 3 weeks later...

Well, I feel a sense of relief mixed with validation after today's appointment. She put him at level 2, which means I don't even really need to second guess the results like I probably would've if he'd been closer to borderline. She said he also tests high for having ADHD but that she would rather not add that diagnosis on initially - at least until he's been evaluated for sensory processing issues, because adhd symptoms can often mask sensory issues. So what now? Besides an evaluation for sensory issues, what happens now? How are things different? She has massive experience studying but advised against ABA since he's seven... I feel unsure of what I feel, if that makes any sense. Mostly I feel relieved that it's not all in my head like a number of friends and family suggested. I guess I'm just curious what happens now?

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We do ABA (granted, it's kind of light), and my son is much older. It certainly probably would've been easier earlier, but it does help. They set age-appropriate goals with age-appropriate reinforcers. My son just tends to have more awareness of the process and the design of the whole thing at his age. One of his current goals involves talking feedback, for instance. 

 

I think ABA is nice because the behaviorist is looking for skills to work on, and while I might grow used to my son doing certain things, she's not the frog in the pot that's slowly heating up, like I am. She can see things and suggest stuff to work on. If I have a really bad day or week, I can tell her about it, and she can help troubleshoot what might be effective goals or modifications to what we're doing. It's nice. It stinks to do that alone!

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We started ABA with ds at 7 and it has been LIFE CHANGING.  That's total hogwash to say it's too late. 

 

I've heard other people trying to parse ADHD vs. SPD.  Fine, whatever.  I'm in the more the merrier, slap it all on.  If what she means is wait on the meds till you get some OT and ABA, fine.  That's what we've done.  

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So what is ABA exactly? Because I've read some about it, but it seems a bit vague to me. Things like "systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior" sound like a really fancy way to say continuing to do what we're doing (seeing a psych who gives us ideas on how to change things or teach things). What am I missing? I mean, does our counseling have to be ABA or NOT? I think I'm confused, so I'm sorry if this is a dumb question!

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