cannot get autism evaluations

[maize]

Seriously this is driving me crazy.

Because once I decide to do something I want to get the ball rolling and...running up against brick walls is irritating.

 

I just keep getting the runaround. People don't answer their phones and don't return calls, if I do get through it is "I am sorry, we only work with kids who already have a diagnosis. No we can't refer you to anyone who can diagnose unless you are on medicaid." Most recent place said that because we had done some evaluations 18 months ago insurance wouldn't pay for anything now (must wait 2 years--is that generally true?)

 

Sigh. Yes I'll figure it out eventually but why does it have to be so hard?!?

Edited June 11, 2017 by maize

[Guest]

No advice, Maize. Just   :grouphug:  Hope you find a solution sooner rather than later! 

[OneStepAtATime]

Similar issues here with various and sundry things over the years.  And it sucks.  I agree, once we find we need to do something I want to get it DONE.  Instead, it takes 100 years to get the ball rolling.  Ugh!

 

No answers but lots of sympathy.

 

As for having to wait two years, talk to your insurance directly and try to get someone who actually has a clue.  A lot of times the front desk office people have no idea what they are talking about with the nitty gritty of previous evaluations.

[Lecka]

Can you get a referral from your primary care doctor?

[Arcadia]

For my area, what is commonly done is going through Early Intervention if under 3. Filing an evaluation request with the school district if already 3 years old.

 

For evaluation at the autism clinic, my husband was told that we need a referral from the primary care doctor because they don't take directs as long as we are under insurance. We were with Blue Cross PPO at that time.

 

We choose to go out of network and paid using my husband's HSA account as his employer gives a generous amount into HSA yearly.

[maize]

Can you get a referral from your primary care doctor?

The place he referred us to is the one that says they don't do evals.

[Crimson Wife]

Choosing a different type of provider can get around "evals only every ___ years" limitations. So if the last eval was by a developmental pediatrician, try a child psychiatrist or a pediatric neurologist.

[Lecka]

You can also go back to your primary care and let them find you a place that actually does evaluations; if they would call around if you went back and told them that. Mine have done some follow-up like that. They might or they might not.

[PeterPan]

If you're self-pay, you can get one. (removing rant about what would happen if the gov't controlled this and hence restricted our access, grrr)

 

We've been the recipient of some kindness, psychs, SLPs, etc. who literally just gave us a better price to help us out, knowing it was a 2nd opinion. Keep calling. I don't know how you're going to get over the insurance hurdle if you want them to pay. They decide who they will pay and when. If you actually want the autism question answered, you're probably going to want to go UP the totem pole, not down. Are you trying to get access to services or answer your own question?

 

Another way is to start low key, with someone kind of affordable, like a behaviorist/BCBA, let them confirm that it actually is ASD, then work up the totem pole. The BCBA around here is maybe $100 an hour, and they could confirm in just a couple hours. Then they could refer you to a psych and you'd be confident you were on the right track.

 

We had sort of a convoluted path like that. If you're paying for that 2nd opinion yourself, then going with that lower priced but qualified person might be an option. Then they could help you by filling out the forms that go to the diagnosing psych. That's actually the hardest part about getting a hs'ed dc diagnosed. Less people are seeing the behaviors, so it's hard to get others filling out the forms showing what Mom is seeing pretty frequently, sigh.

Edited June 11, 2017 by OhElizabeth

[geodob]

Maize, Autism is defined as a 'Medical Condition', and requires a Medical Diagnosis.

With any Medical Condition, the initial evaluations might not be conclusive?

It would be absurd to limit a further evaluation, for another 2 years?

(Their is an early indication of Cancer?  But you'll have to wait 2 years, before further tests?)

 

But one important thing with Autism, is that their is a comprehensive network of Local Support Groups,

So that you most likely have a Local Group, who can provide very helpful local information that they have gathered together.

Such as which doctors are very helpful.  As well as local professional support services.

You might find them listed in your local phone directory?

[Janeway]

Seriously this is driving me crazy.

Because once I decide to do something I want to get the ball rolling and...running up against brick walls is irritating.

 

I just keep getting the runaround. People don't answer their phones and don't return calls, if I do get through it is "I am sorry, we only work with kids who already have a diagnosis. No we can't refer you to anyone who can diagnose unless you are on medicaid." Most recent place said that because we had done some evaluations 18 months ago insurance wouldn't pay for anything now (must wait 2 years--is that generally true?)

 

Sigh. Yes I'll figure it out eventually but why does it have to be so hard?!?

Yes, this is the story of our path to DX.

 

Years ago, when my older children were evaluated, places still took insurance and it took 2+ years to get in. But there were a couple places. Now, trying to get my now 13 yr old evaluated, I have been working on an evaluation for over 4 years. I run in to dead ends everywhere.

 

Also, it sounds like you might be contacting treatment centers. Treatment centers generally do not do evaluations. For us, the only places that do evaluations are big children's hospitals. You will want to look for those places. ONLY reason my son is getting evaluated now is because my husband got laid off and we got medicaid. However, private insurance will be kicking in soon so we are rushing to get the evaluation. Once on private insurance, we will not be able to get him evaluated.

[maize]

Just called the autism clinic at our state flagship university. They will do testing, but it is $1000 for each child (I have two in need of evaluations) and is only covered by insurance if you are on Medicaid or the university's own plan. I asked if it could be covered at our of network rates for our PPO and she said no.

[PeterPan]

Maize, a university near us has a clinic that does it like that. That same eval privately would be 3-4X that much or more. You might want to go ahead and get it scheduled, then cancel if you find a different option you like better.

[OneStepAtATime]

I agree, go ahead and schedule one evaluation with the Autism clinic, probably for the older child, while you seek other options.  If there is any way you could get the money together then if nothing else becomes an option you at least are already on the books for the eval.  The wait list can be long. The reason I would wait to schedule the second one is that the experience might not be a good or useful one plus it might work much better financially to spread it all out.

[PeterPan]

I would do both. Earlier is better on autism.

[maize]

I would do both. Earlier is better on autism.

 

Earlier is better but if the money isn't there the money isn't there.

 

If our state had a scholarship program like yours does that a diagnosis would qualify them for the financial sacrifice would make more sense. We don't.

 

Sigh.

[OneStepAtATime]

:grouphug:

[PeterPan]

It may also qualify you for county level services with your board of disabilities. In our state, it varies with the county, but that can get you a small stipend (greater than the cost of that eval) or even complete coverage of OT and ST. Just varies. Could qualify you for a medicaid waiver.

 

Also, was it the older or younger who had the eval 18 months ago? If it was the older and the younger seems more severe, then eval'ing the younger first would make more sense. The board of disabilities, IEP stuff, etc., is all dependent on qualifying. If the younger is more affected, he's more likely to qualify. We have that around here, where kids will qualify with the county board when they're younger and drop as they age. They get just enough improvement that they no longer qualify. 

 

How much younger are we talking anyway? I'm just asking, because I really disagree with treating the older first. In autism, a lot of time the younger siblings are more affected. So if the older one lasted this long, waiting another 6 months is no big deal. But if the younger is more affected, maybe nonverbal, maybe really in a position where 6 months of ABA (that maybe the older sibling didn't even need) could make a huge difference, then it would make sense to eval the younger first. It just depends on what is going on.

Edited June 12, 2017 by OhElizabeth

[maize]

It may also qualify you for county level services with your board of disabilities. In our state, it varies with the county, but that can get you a small stipend (greater than the cost of that eval) or even complete coverage of OT and ST. Just varies. Could qualify you for a medicaid waiver.

 

Also, was it the older or younger who had the eval 18 months ago? If it was the older and the younger seems more severe, then eval'ing the younger first would make more sense. The board of disabilities, IEP stuff, etc., is all dependent on qualifying. If the younger is more affected, he's more likely to qualify. We have that around here, where kids will qualify with the county board when they're younger and drop as they age. They get just enough improvement that they no longer qualify.

 

How much younger are we talking anyway? I'm just asking, because I really disagree with treating the older first. In autism, a lot of time the younger siblings are more affected. So if the older one lasted this long, waiting another 6 months is no big deal. But if the younger is more affected, maybe nonverbal, maybe really in a position where 6 months of ABA (that maybe the older sibling didn't even need) could make a huge difference, then it would make sense to eval the younger first. It just depends on what is going on.

Our state is not a good one for services. There are no stipends. There is no county board of disabilities. There may be a possibility of a Medicaid waiver for children under age 6, which would be a reason to get the younger child diagnosed first.

 

Both had evaluations 18 months ago.

 

They are turning 12 and 5 this summer.

[PeterPan]

Why do you feel they didn't get the diagnoses the first time around? In our case, we just didn't clue in that we had to give the forms to people who were seeing the behaviors. Like it sounds really obvious, kwim? And some of the forms I didn't understand what they meant. 

 

Just thinking that if whatever was holding it back before from being accurate isn't fixed, it will happen again. That gap with who was seeing things and what I could recognize even when I was seeing it was a big reason why we brought in a behaviorist. That way someone objective besides me, besides dh, was seeing the behaviors, working with him one on one. And the behaviorist, for us, was under $100 an hour. So for just a pittance comparatively, we were able to get things sorted out.

[maize]

I wasn't looking for autism the first time around. I'm ADHD, and I was seeing ADHD and anxiety in the kids. When I talked to the neuropsych and filled out forms, those were the traits I was thinking of.

 

Basically, this stuff is pretty subjective and it is easy to find what you are looking for and hard to see what you are not. Some behaviors have gotten more severe or, in the case of the older child, more obviously age inappropriate, in the past year that have had me reading up on autism and going "oh".

 

I've been trying to get ahold of that office to ask if they did tests for autism; they never answer their phone.

Edited June 13, 2017 by maize

[MysteryJen]

Gently, $1000 for an evaluation is an excellent price, at least here. Our insurance does not cover any sort of evaluation and we had to pay out of pocket for our private evals at $1900 for each kid. 

 

Get the evaluation, pay it off over time, use an HSA, whatever you need. With a 12 yo, you need answers and a plan headed into the teen years.

[PeterPan]

I wasn't looking for autism the first time around. I'm ADHD, and I was seeing ADHD and anxiety in the kids. When I talked to the neuropsych and filled out forms, those were the traits I was thinking of.

 

Basically, this stuff is pretty subjective and it is easy to find what you are looking for and hard to see what you are not. Some behaviors have gotten more severe or, in the case of the older child, more obviously age inappropriate, in the past year that have had me reading up on autism and going "oh".

 

I've been trying to get ahold of that office to ask if they did tests for autism; they never answer their phone.

 

You are correct that psychs sometimes have some preconception about what they're looking for. An autism eval needs to go a totally different direction from an ADHD and kiss and say yeah it's not ASD eval. So the ADHD-expert psych who saw ds first ran a classic ADHD eval. He did tons of ADHD and processing and gave an old GARS, not even keyed to DSM5 (the then current standard) and BLEW OFF everything I said. He missed a ton and was a total jerk. 

 

The psych we went to who specialized in autism spent hours upon hours, first listening but then DOING stuff with ds, seeing his reactions in lots of scenarios, provoking behaviors. And he ran form after form after form, all keyed to DSM5. 

 

So what you can do to see what was run is look at your written report. Usually the psych will list all the tools they ran. They might not type out every score and detail, but the list will be there. So you then google that alphabet soup list and see if any of them were specifically tools for discriminating ASD from other diagnoses. So there's something like the GARS, which simply looks at ASD, but there are also tools like the ADI-R, the Vineland, etc., that can discriminate ASD from ID, anxiety, bipolar, etc. And frankly, the questions on it are so ugly that if you filled it out you wouldn't forget. 

 

So I agree, it happens that psychs don't even run the tools. They've concluded what they think they need to run and they either don't own them (like the jerk who didn't bother to update his GARS) or whatever. It takes somebody who specializes in ASD to buy all those extra tools. That's why you're looking at an ASD clinic now.

 

I will say, the issue then is either having him in the clinic enough that they get to see the behaviors (multi-factorered eval) OR having enough people in your dc's world seeing the behaviors that they can get marked on the forms. Even the forms won't do you any good if the people aren't seeing the behaviors. Like we were trying to have Sunday School teachers fill them out, and the teachers never saw him for more than 20 minutes at a time! The most they'd see in that is lightswitch flipping, vomiting, and aggression. They didn't see the lining up of toys, repetitive speech, etc. that you get if you're with him for longer blocks. It's just a real issue for homeschoolers, etc. 

 

So you want to be really careful and slow down and ask what is being done at the clinic. Will it be multi-factorered (a team) or one person? Who will be on the team? How many hours? Will they want other people to fill out the forms or will it be based completely on the parents and the team? Ask these things upfront. It's still not a deal if it's not gonna get t done.

 

So the older is 12? That's rough. What do you want to change as a result of the evals? Socialthinking - Articles You might read this article and see where you peg him. Your younger is too young and shifting to fit the profiles yet, but your 12 would. 

[PeterPan]

Another way to approach this, especially with your 12 yo, is to get a social thinking evaluation done by an SLP or someone trained in it. Socialthinking - Clinical Training I just got my ds eval'd for this, and I got an AMAZING 14 page report. Way more informative than the piece of paper from a psych saying ASD. (Yes, I know some psychs write helpful reports, lol.) Technically an SLP who specializes in autism *can* diagnose. If you go to someone from that list who is trained in the dynamic assessment, it might be very informative for you and a lower price. Might even be something your insurance would cover, since it would go under speech therapy instead of psych, hmm. 

 

See one of the things that happen at this age is they put the kids on meds for the ADHD, and then they sit there debating is it ASD too, was it that they were just oblivious, blah blah. The dynamic social thinking assessments, when paired with things like the Test of Problem Solving (TOPS3) and theory of mind testing, give you a way to quantify that. They let you see the real deficits of autism. You probably aren't crying milk over his stims right now. It's probably more like whether he understands world problems, can he take perspectives, can he collaborate in group settings, can he solve a life problem, etc. And that's what this assessment would show. It can be hard to find! I drove 3 hours one way, ugh. But the clinic was ASTONISHING. Like that's their whole gig, social thinking.

 

I keep tossing out options like this, because to me there are lots of paths. The one you choose is sometimes access, but it's also related to what you're trying to change, what you're trying to make happen. If what you want is to have someone validate it's ASD, fine. But I'm guessing you want something to CHANGE. So a behaviorist, working under a psych, could diagnose and then turn it into an action plan. An SLP, same gig, could diagnose and then make a plan for social thinking intervention. Those things would change your lives. A psych is about access and referrals. But sometimes, these other paths can get you access too.

Edited June 13, 2017 by OhElizabeth

[Crimson Wife]

Thinking out-of-the-box here.

 

With the almost 5 y.o., you might want to see if you can find a BCBA who can run the ABLLS or the VB-MAPP. I got WAAAAAY more useful information from those than the ADOS or the Vineland. You could take the results back to your general pediatrician and have him/her make the diagnosis of ASD (which you want a M.D. to do for the paper trail). A few hours with a BCBA to run the ABLLS or VB-MAPP plus writing the report should cost only a fraction of the $1000 quoted. And you will know what skills the child needs work on.

[maize]

Thinking out-of-the-box here.

 

With the almost 5 y.o., you might want to see if you can find a BCBA who can run the ABLLS or the VB-MAPP. I got WAAAAAY more useful information from those than the ADOS or the Vineland. You could take the results back to your general pediatrician and have him/her make the diagnosis of ASD (which you want a M.D. to do for the paper trail). A few hours with a BCBA to run the ABLLS or VB-MAPP plus writing the report should cost only a fraction of the $1000 quoted. And you will know what skills the child needs work on.

This sounds promising, what does BCBA stand for?

[Lecka]

Board Certified Behavior Analyst

[maize]

And yes, more information is better. If it isn't autism I want to know what it actually IS, KWIM? The ADHD and anxiety are definitely there, alongside definite rigidity, sensory processing stuff, and social deficits. The older child also has a tic disorder. Both have speech articulation disorders and I suspect general apraxia.

 

And I have 7 children and limited time and funding to sort everything out!

 

I don't think I would even know where to start though if I didn't read this board, so I very much appreciate everyone's input :)

Edited June 13, 2017 by maize

[maize]

Right now I would be happy if the four year old could just get fully potty trained and, heaven help me, move past the poop smearing obsession.

 

When he was three I put him in the district preschool on a IEP, but it didn't end up being a good fit or very helpful. I'm planning to keep him home this year with the hope that public school kindergarten will work for him next year.

[PeterPan]

I would get the 4 yo eval'd immediately. I would beg, borrow, and get him eval'd immediately. What happened with the school? Your ped can do a diagnosis, write the letter, and that alone is enough to force the ps to eval for ASD. Then he could go into an ASD program. Was he mainstreamed before? He sounds like he needs significant help.

 

It doesn't seem likely that a dc with that degree of disability this year is going to be mainstreamed and happy go lucky next year. He's going to need significant intervention. There are probably language disabilities, etc. The testing Crimson listed is going to show the language holes, developmental holes, etc. 

[PeterPan]

My ds was just *beginning* to potty train at 4 1/2. Long journey, sigh. He still has wet pants at 8. You've got a long road there. 

 

What does your insurance cover for ABA? If you get a diagnosis (ped, anybody), then does that get him medicaid and then ABA? You need someone to help you get some answers on how to help him, to make a game plan. The point of the diagnosis is to get access and funding. So you work backwards on what you want to make happen and who can pay for it and how you get him qualified.

 

Have you contacted your board of developmental disabilities? 

 

What is your ped saying?

Edited June 13, 2017 by OhElizabeth

[maize]

The preschool he was in was for kids aging out of early intervention. It was fine at the beginning of the school year when the class was small but the class size kept growing as they added kids turning three throughout the school year, and it became overwhelming for him.

 

There is no board of developmental disabilities.

 

I don't know about insurance and ABA, I need to investigate.

 

I'm in a solidly red state with a lower population, this tends to equate to fewer resources available. I am working on figuring out what is available.

Edited June 13, 2017 by maize

[OneStepAtATime]

:grouphug:

[Innisfree]

Maize, I've been following this without having much to offer except sympathy, til now. I would encourage you to talk to your insurance company ASAP and find out what they can offer in ABA, and if there is an age cut-off in your state for autism services.

 

This is my personal soapbox for parents of kids who may be on the spectrum. Each state has its own laws, but for many, if a child is diagnosed after some arbitrary age, the insurance companies are not obligated to provide services like ABA for autism. As long as they are diagnosed before that age, they have access to services. So there is good reason to do whatever it takes to get that diagnosis soon. At least find out what rules apply to you, so you can make informed decisions.

 

Good luck. I hope you can find a way to get what you need.

[Daria]

Right now I would be happy if the four year old could just get fully potty trained and, heaven help me, move past the poop smearing obsession.

 

When he was three I put him in the district preschool on a IEP, but it didn't end up being a good fit or very helpful. I'm planning to keep him home this year with the hope that public school kindergarten will work for him next year.

 

What category was used to qualify him for the IEP?  

[Lecka]

Iirc my son had developmental delay on his IEP at first and then it was changed to autism.

[maize]

What category was used to qualify him for the IEP?

I think social skills delays and speech? Early intervention did the evals, just before he turned 3. This was almost two years ago. Last year I put him in a private Montessori preschool, he did quite well there--small class, very peaceful and organized setting.

[Crimson Wife]

Iirc my son had developmental delay on his IEP at first and then it was changed to autism.

 

Same for my child. Global Developmental Delay at 24 months and then "classic" autism (under DSM-IV criteria, would be ASD-2 today) at 34 months.

[Guest]

deleted for privacy

Edited August 13, 2017 by Guest

[Lecka]

Maize -- just to let you know, on IEPs there are only certain qualifying categories, and they are listed in federal law (IDEA). Speech is a category. Social skills isn't a category.

 

You can have goals on the IEP about social skills, but it isn't a qualifying category.

 

Iirc they can only use developmental delay with younger kids, until age 6 or 10 or something.

 

The qualifying category is supposed to be the category that best represents the child.

 

At the beginning of getting an IEP, there is a step of deciding whether or not the child qualifies and deciding on what category to use. For my son with autism this was all a blur or just seemed to be part of everything else. I don't know. It seemed very vague, because I didn't know that assigning a category was a "thing." It is a thing, though.

 

My older son had an IEP in pre-school for just speech, and he didn't qualify for special needs pre-school. I took him to a school where he got speech therapy twice a week. Nobody at my son's special needs pre-school who was there for free with having an IEP, had "just speech."

 

That is pretty local because some places have a lot more kids in their special needs pre-schools. (Where we lived -- they had full-pay for typical peers, they had a reduced rate for typical peers whose parents had a lower income or worked at a certain place like for the school district, and they had kids who went for free from their IEP. But many/most kids with an IEP went for just services but wouldn't qualify for special needs pre-school unless the parents put them in as typical peers -- and then they could have speech therapy at pre-school.).

 

So to me -- where I lived, you wouldn't see a kid who qualified for speech in special needs pre-school. Unless you sent him there bc they recommended it or said you could qualify in a different way (like -- pre-term babies I think could automatically qualify, too, and children of college students, and just various other kids). They could have known you qualified or just recommended it and then you qualified, and it could have been vague.

 

But to me -- when somebody says their child qualified for special needs pre-school bc of what is on the IEP ----- I expect it to be more than a "just speech" or "something overall pretty minor" kind of situation. But it varies by location. But I would expect for more kids to qualify if the funding was good, iykwim.

[maize]

I know he qualified under two categories, with speech being one of them. The other may have been developmental delay?

[Lecka]

Also -- it is good he did well at the Montessori preschool. I don't want to quibble or act like "everything is bad all the time."

 

But you want to think of one of two things for when you answer questions about this.

 

One, maybe it was the perfect setting for him. Maybe he does great when he is allowed to be self-directed, or there is high structure, or he had a special relationship with a teacher/s, or they made many accommodations for him that really made a difference (and you can say what they are!), or anything else.... and it was different from the setting at the special needs pre-school in x ways that made it a lot better setting for him.

 

Two, he had things he did there that would flag on an autism screening (or if mentioned would seem like autism -- even if they don't exactly fit a screening). And he ALSO did very well there.

 

You either want that things didn't show up BUT it was the perfect setting and/or they made accommodations for him, OR he also had things showing up there.

 

You can't go in and say "everything was great at Montessori pre-school" or they will think "oh, apparently that means no issues with interacting with peers," and you don't want that.

 

You want it to be that either he didn't really interact with peers, or he had a lot of structure/accommodation when he did, or there were things that seem like autism. You don't want to give an impression like he got along great no big deal.

 

Unless that is not the kind of thing that makes you think it might be autism.

 

For a diagnosis I think you have to watch what you say.

 

In general -- I get it; he did well at Montessori pre-school, that is good :)

[Crimson Wife]

Our district has multiple preschool programs and speech & language delay w/o other issues *IS* one. It is at the same site as my DD's autism class and the "severely handicapped" class but meets for fewer days & hours. There was discussion about moving my DD into the class for her final year of pre-k. However, because at that time we were still fighting for private ABA funding approval, we decided to keep her in the autism class so that she could at least receive small-group ABAish intervention (I say "ABA-ish" because it was the hybrid Early Start Denver Model).

[maize]

I talked briefly today with the neuropsych who did the testing 18 months ago. He said they did not do the ADOS for ds11 because the screening questionnaire we filled out didn't flag autism.

 

My memory of the questionnaire is that a lot of the questions had to be answered in a "does child do x more than normal for their age/ more than their peers" kind of way; I rather suspect that my idea of normal is quite skewed.

 

But my ideas of what autism looks like may also be skewed.

 

Here's a ds4 anecdote for the day:

 

I stopped at a friend's house this afternoon and picked up a folding easel she was giving away. I laid it on the floor of the van in front of ds4's seat. He had a massive screaming meltdown because he didn't want it there and demanded that I stop the car and move it. We were just a few blocks from home so I just kept driving. Got home and ds would not get out of the van, continued screaming and demanding that I move the easel to a different place in the van and then back up. I finally just did it because I also had the two year old and baby to take care of and wasn't up to coping with an ongoing meltdown. I moved the easel to the next row back, backed up the van a few feet--and the problem was all "fixed".

[PeterPan]

Just as a little rabbit trail, you might consider the source of the "did well in the Montessori preschool" assessment. We've had threads before about what workers say vs. what's really going on. My ds was going to a sunday school without me, and you wouldn't BELIEVE the crazy spread in feedback I got. Dad would say everything was fine. Teacher would hedge and have weird experiences. And the people who knew autism were seeing level 3 aggressive behaviors and extremes. 

 

Mainly though, I'd be concerned that you're giving a take that was told to you by the workers, which may or may not be accurate. Unless you were IN THE ROOM observing or observing through glass, you don't really have a clue what was going on. You only know what they told you, and people miss things, understate things, are oblivious to things, etc.

 

I'm not saying it wasn't a lovely program! It probably was. Just saying I'd be cautious, because people's takes on stuff can be SO inaccurate. All kinds of stuff could have been going on you didn't realize and they were covering it. Either they're magicians, or stuff was going on.

Edited June 15, 2017 by OhElizabeth

[PeterPan]

I talked briefly today with the neuropsych who did the testing 18 months ago. He said they did not do the ADOS for ds11 because the screening questionnaire we filled out didn't flag autism.

 

My memory of the questionnaire is that a lot of the questions had to be answered in a "does child do x more than normal for their age/ more than their peers" kind of way; I rather suspect that my idea of normal is quite skewed.

 

But my ideas of what autism looks like may also be skewed.

 

Here's a ds4 anecdote for the day:

 

I stopped at a friend's house this afternoon and picked up a folding easel she was giving away. I laid it on the floor of the van in front of ds4's seat. He had a massive screaming meltdown because he didn't want it there and demanded that I stop the car and move it. We were just a few blocks from home so I just kept driving. Got home and ds would not get out of the van, continued screaming and demanding that I move the easel to a different place in the van and then back up. I finally just did it because I also had the two year old and baby to take care of and wasn't up to coping with an ongoing meltdown. I moved the easel to the next row back, backed up the van a few feet--and the problem was all "fixed".

 

There's always some context for that, an antecedent. Are you behavior logging? That makes it clear you're seeing extreme behaviors, but your anecdotes will be more helpful if they're in ABC (showing the antecedent, the behavior, and the consequence, and then his response to the consequence and the duration). Then you have something to show trends and patterns.

 

Like with my ds, it was easy for people to say oh yeah but LOTS of kids are brats, LOTS of kids throw things, LOTS of kids have bad behaviors. When you show the antecedents and consequences, then it becomes obvious what is going on, that for him there were patterns, and those PATTERNS are the patterns of autism.

[PeterPan]

Adding: my ds threw OJ all over the car today. I totally hear you. 

[Lecka]

Well -- Antecedent: mom places easel on floor in front of child, Behavior: child screams, Consequence: mom moves easel.

 

My take is ---- if you are going to move the easel anyway (and let's be honest -- sometimes we are all going to move the easel!!!!!!!) I think either do it for a first polite (or minimally acceptable) request; or else try to insist he calm down and ask, then you move it.

 

If that is realistic at least!!!!!! If it's not, it's not.

 

But to be honest, without more context this is the kind of anecdote where a lot of kids might do it, it doesn't sound super-autism-y without more context about how often he does it, or for how lot things like this have been going on.

 

That doesn't mean it doesn't mean something -- I think it probably does mean something -- but it is an anecdote without context too. I don't mean that like that is what I think -- I mean that like -- that is my impression for how it might come across. It comes across like a lot of kids might do that, but context matters!

[Lecka]

To me there is context that you are mentioning it on LC and not Chat. Like -- if you wanted reassurance it was not a big deal, with context that it seemed like a phase or that it seemed somehow out-of-character, I think you would tend to ask on Chat. Not 100% -- but it is some context to me. Plus you have been reading up -- that is context to me, too. You didn't read up and feel like "well that doesn't seem to fit."

 

We had some thought that my older son might have ADHD, and when I read up on it not much seemed to fit him. He turned out not to have ADHD. So I tend to think -- if you read up on it, if it didn't seem to fit then you would have that feeling.

[Lecka]

And just more about my previous comment... maybe what you really want (and what would be very reasonable for you to want) is "child tolerates easel."

 

But maybe that is Point F for some time in the future.

 

In the meantime -- maybe you look for Point B "child uses words, child doesn't scream." Maybe that isn't a fair thing to expect, maybe that is really Point D you work up to, I don't know.

 

But there is a middle ground where -- he can't handle the easel; but he can maybe use his words instead of screaming.

 

It depends on the child I think, whether tolerating the easel, or asking instead of screaming, is the better short-term goal to have.

 

But it is the kind of thing that can go a long way even if you don't get to your long-term goal (for a long time).

Edited June 16, 2017 by Lecka