cannot get autism evaluations

[maize]

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!

O% chance he would have calmed down and asked politely.

 

Meltdowns like this used to happen several times a day, then we went through a period of months when they had toned down, now (past few months) there's been an up-tick again.

[Lecka]

Also -- I do assume that if ignoring was likely to

be effective you would have ignored him. If you know he will get extremely extremely worked up -- you can still ignore, but you don't HAVE to ignore, there are other strategies.

 

I thing for context -- you have other kids, you have probably ignored some nonsense you thought would blow over quickly --------- so if you think stopping the car makes sense there is probably a reason for that ------- like that your son would be unusually upset or take an unusually long time to calm down.

 

Kids do need to be in basic equilibrium as much as possible, and if they have a hard time maintaining or returning to equilibrium; then I don't think it is bad to aide them. But ideally you can aide them while also having other strategies where you are getting to Point B and then Point C

over time.

[maize]

One of my concerns with paying out of pocket for autism evals is--if we do the evals and the answer is "nope, not autism"--well, that is good to know, but rather minimally helpful to me. And I really don't have money to spend for something that is minimally helpful.

Edited June 16, 2017 by maize

[Lecka]

Just saw your post.

 

It would have been 0% for my son, too, if he went from "things vaguely okay" to "now I am screaming and it is going to be ugly for an unbelievably long time."

 

He has gotten to "asking" and he has gotten up to "as his mom I know it is reasonable to expect him to calm down and do something polite" (which might be pointing or nodding his head if i said "[name] wants mommy to x"). Or maybe there is some build-up where I see his face or demeanor and can ask and give him a chance to say "yes" (or whatever) before he gets to screaming.

 

We worked up to this with help from a therapist, though.

 

But in general sometimes it is a good goal for a child to have an appropriate self-advocacy skill to say "I don't like that" or "that is bothering me." Sometimes it is appropriate to expect a child to just deal with it. They are both good goals and they both have a time and a place.

 

I think this is a big difference for me with autism parenting. For me with regular parenting -- while I do want my kids to have self-advocacy skills, the "deal with it" is stronger in me, but that is my adjustment for autism parenting because it can be the nice thing to do.

Edited June 16, 2017 by Lecka

[PeterPan]

I was only reading quickly on the anecdote, but I assumed it had a whole stream of context too. Like you can ABC pretty tightly (and of course should), but there's also that flow of the day and the larger context. So then the behavior is in that larger flow, not stemming only from the most immediate thing. 

 

And yeah, language is an issue. Has he had language testing? You can check your previous report and see what was run, like whether there was a CELF or something.

 

 

O% chance he would have calmed down and asked politely.

Meltdowns like this used to happen several times a day, then we went through a period of months when they had toned down, now (past few months) there's been an up-tick again.

 

So what has changed? More stressed? Growth spurt? Change in routines? Higher expectations? Something with his diet or an intervention? That's where having someone help you (behaviorist) can be really good, because they know everything you're doing and spot those sorta big picture level things.

 

 

One of my concerns with paying out of pocket for autism evals is--if we do the evals and the answer is "nope, not autism"--well, that is good to know, but rather minimally helpful to me. And I really don't have money to spend for something that is minimally helpful.

 

Any luck with the behaviorist angle? Because you can get a lot of hours with a behaviorist for the cost of one psych eval. And that univ psych eval is going to be students. That's why it's cheap.

[Lecka]

Well, for me I was 95% sure probably before the appointment. I had a long wait between getting the referral, getting the appointment, being on the waiting list, etc, and having the appointment. By the time I had the appointment I was pretty sure, but I had some hope that they would say no.

 

But really he was pretty obvious, I wasn't at risk of being given a false negative.

 

I think one thing to do is make sure you are going somewhere that does diagnose. There are people/places where there thing is "we rarely give the diagnosis." And some people honestly are looking for that -- and there are positives, especially if something helpful is going to get recommended. But if it's not what you want, it's not what you want. I don't like it -- but I think there are kids who have good outcomes when their parents don't want a diagnosis and see a psychologist (or whatever) who tends not to diagnose ASD and it is what everyone is comfortable with and it works out well.

 

But that is something that exists and it sounds like it is not what you are looking for.

 

Then I think -- don't be too neutral. Don't say things that make it sound like your child doesn't have autism, even if true, just to be evenhanded. It just doesn't really work that way imo. I mean -- be honest, but don't build a case 50-50 and let them give you a verdict. Don't take back things you say with counter-examples. Unless you have some other records to take in that are showing autism symptoms, you can't afford to do that. They are looking for some things you might not have as a homeschooler, like problems in pre-school or daycare, or comparisons from semi-professional people who are around your kid and can compare him to other kids. If you don't have that then you can't go in 50-50, because that will be like going in 85-15 considering other information you may not have as a homeschooler.

[Lecka]

My son's university clinic eval was not with students. I don't know what it cost though as insurance did pay.

 

Just for what could be making things more difficult ----- a huge thing for my son was getting too big for the stroller. He could cope with a lot of things just fine in the stroller, that he couldn't cope with out of the stroller. But he got too big and also he didn't want to always just be in the stroller, when he was this age.

 

It can be good for kids to get more engaged; but it can also be harder for them when they are more engaged.

 

That is in addition to -- higher demands, some change, etc.

 

The positive if being more engaged is a factor, is that being more engaged is a good thing, even if it is also hard. But it can be a developmental kind of thing with autism around this age sometimes (I think it was developmental for my son in a lot of ways, and I think it is something where it can be but it is random depending on the kid).

[Guest]

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".

This might give you some context from a Montessori perspective. I have always admired Maria Montessori (doctor/ educator) and have read some of her books. I couldn't remember which of her books I had read this in so I found reference in this site:

http://www.michaelolaf.net/newsaugust2010.html

 

Here's the quote:

"A Sense of Order

 

In the first three years of life children have a very strong sense of order—of both place and of time. An infant can become very upset over things that we would not notice or think of as upsetting; for example the child who cried because an umbrella, which he had seen many times closed, was opened for the first time. Or a child being upset by a change in temporal order by being bathed after a meal when she has become accustomed to being bathed before a meal.

The young child is constantly trying to make sense of the real world, to create order, to create himself in relation to it. When the child figures out where everything belongs and how the day goes, he develops a feeling of security.

A child has his own inborn natural rhythms, or knowledge of when to go to sleep and when to wake up, when to eat, what to eat, and how much. If the parent can take time in the beginning to observe the child, to learn and respect the inner guides—for example trying to never wake a sleeping child, or allowing him to nurse until he wants to stop—life will settle into a routine more quickly."

 

Certain things at the school may have been viewed through the Montessori perspective. Kanner first described autism in 1943, nine years before Maria Montessori died. However, Maria Montessori was on the right track, I feel. She just wasn't fully aware in those days what she was seeing ETA or what she was in fact seeing in younger children perhaps just lingers longer in the autistic child or the child does not progress without some help. Anyway, many of these behaviors are in fact a disruption of order as the autistic child perceives it.

 

OK, now read this:

"Understanding the Problem of Autism

 

Paul has always been obsessed with order. As a child, he lined up blocks, straightened chairs, kept his toothbrush in the exact same spot on the sink, and threw a tantrum when anything was moved. Paul could also become aggressive. Sometimes, when upset or anxious, he would suddenly explode, throwing a nearby object or smashing a window. When overwhelmed by noise and confusion, he bit himself or picked at his nails until they bled. At school, where his schedule and environment could be carefully structured, his behavior was more normal. But at home, amid the unpredictable, noisy hubbub of a large family, he was often out of control. His behavior made it harder and harder for his parents to care for him at home and also meet their other children’s needs. At that time-more than 10 years ago-much less was known about the disorder and few therapeutic options were available. So, at age 9, his parents placed him in a residential program where he could receive 24-hour supervision and care."

 

Found here:

 

https://childdevelopmentinfo.com/child-psychology/autism-aspergers/#.WUMweO6p5Ds

 

Think now how structured the Montessori environment is. This could explain a lot as to why a child with such challenges might do well in an environment like a Montessori school ;)

 

It can also possibly explain why things like this may have been missed. They could have been viewed through a Montessori lense rather than through the autism lense.

Edited June 16, 2017 by Guest

[maize]

Yes, I think the Montessori classroom was a very good environmental fit for ds. Quiet, orderly, predictable, and an emphasis on letting the children choose their own activities and not interrupting when they were involved in a task.

[maize]

It sounds like the neuropsych we saw before would be willing to run the ADOS test. Any reason not to do this? My hesitation would be that I don't know how often they do this test or how many ASD kids they see on a regular basis. I can of course ask those questions beforehand. If I understood correctly he said he could bill it the same as a therapy session, so much less expensive but just the one test.

[PeterPan]

Did he run any language testing before? You'd really like language testing as part of this. Did he run any spectrum screening tools before? Is he planning to now, along with the ADOS? The ADOS itself can be quite variable, even though it's standardized. I think you should do it, but just saying it would be nice for him also to run some other tools.

 

I think that's a good option. This is on your younger, yes?

[Lecka]

I think ask.  The ADOS is supposed to be good, but at the same time, it is not 100% at identifying kids with autism (or that is my understanding).  It is kind-of new, in the scheme of things, and the conception of autism has changed even in the last 20 years (from only being very severe kids to being more broad).  It is just a new kind of thing.  

 

I don't know if you have much time to read articles on the internet, but I tend to like www.spectrumnews.org.  You can search for ADOS on there and find out about it.

 

My son had it -- he was pre-school age, but a lot of it is the evaluator blowing up a balloon and seeing how the child reacts.  (And interacts with the evaluator.)

 

The thing is -- depending on what you are looking to get, all you need may be one test.  If you are looking for: autism:  yes or no.   Then if you get "yes" from ADOS ------ well you are good to go!!!!!!!!!!!!!

 

It wouldn't give as much information, in its way, as doing various other things.......... but if you are looking for autism:  yes or no: and you get "yes" ----- then it has done what you want it to do.

 

For me ----- I am a public school parent and my husband is in the Army, so we qualify for ABA.  So for me ---- having the autism diagnosis is something I can use to access ABA (through military insurance).  And, it is something I can use with public school to try to get appropriate services and accommodations.  

 

I think if your goal is:  to continue home-schooling:  you want suggestions for ----- "so what are some next steps?"  ------ if it is possible, I think ask if they would be able to give suggestions for next steps.

 

If there suggestion is "ABA therapy" ----- but you don't have insurance coverage and your state doesn't provide anything ------ that is not necessarily the most useful thing.  But maybe it will turn out your state does provide something.

 

If the suggestions are along the lines of:  tell the public school to put x, y, z in the IEP, or ask for x, y, or z placement, or ask for x, y, or z support/accommodation ------ that may or may not really help you with home schooling.  It might give you stuff that you can easily incorporate into homeschooling.  Or it might just formalize what you already do.  B/c for public school ---- you can need some paperwork to get them to do common-sense things that you might just DO as a parent/homeschooler.  

 

I think if you just personally want/need to know if your child would identified as having autism based on the ADOS ----- then go for it.  It is not the end-all be-all, but it IS something.  

 

I think if you read a little about the ADOS and can get a sense like -- yeah, it would identify my child -- then that seems good.  If you read about it and feel like -- well, maybe my kid flies under the radar on this one --------- that is a real thing, too.  

 

There just are not perfect answers right now, but if the ADOS will work, then that is good.  

 

Edit:  overall -- I think it is a good option, too.  But at the same time -- it is not the end-all be-all.  But a good option ----- yes, I think it is.  

 

Edit again:  the bottom line in a lot of ways is, they attempt to standardize it and to make it less subjective and more objective -------- but it is very hard, it tends to be more subjective and less objective, and that is just kind-of how tends to be, because it is a diagnosis based on behavior that get to be subjective at a certain point and in some ways.  

Edited June 16, 2017 by Lecka

[PeterPan]

Also, check whether they had to update their stuff to do the ADOS per DSM5. You'd be surprised that people are still diagnosing with old materials. I would just flat out ask or google it or something. Sometimes the forms they use are totally changed for DSM5.

[Lecka]

At a certain point -- the framework of "autism" is just something that some psychologists vote on.  It isn't the most objectively delineated thing.  But -- it is still good, in my opinion.

 

I think there is a good chance that (for me, personally) my son might have been identified as having MR (mental retardation) 30-40 years ago.  In that sense ----- it is very, very arbitrary.  

 

But i think that identifying autism is good, I think being able to pinpoint therapies/approaches/supports/likely problems is extremely helpful. 

 

But sometimes it is not the most definitive thing ever.

 

But do I think my son fits into this framework called "autism" that psychologists have come up with based on doing their best to group people together in some similar way and by picking out certain things that are similar among different people?????? Well, my answer is: yes, my son really does fit into this broad framework that psychologists have come up with.  Yes, yes he does.  

 

But it is what it is, in some ways, if they wanted to psychologists could come up with a different framework....... it is possible...... on a lot of levels there is a lot of subjectiveness in there........ but at the same time, these are professionals who have professional standards, and they DO work hard at their jobs, and they DO think this is a sensible framework to use.  But is it the most subjective thing ever?  No, it just is not at a certain point.  

[Guest]

Also, check whether they had to update their stuff to do the ADOS per DSM5. You'd be surprised that people are still diagnosing with old materials. I would just flat out ask or google it or something. Sometimes the forms they use are totally changed for DSM5.

Based on research I have done, yes, the ADOS has been revised to reflect new criteria from the DSM-V. If there are specialists that are still using the old ADOS, that is definitely something worth looking into before hand!

[Guest]

deleted for privacy

Edited August 13, 2017 by Guest

[Crimson Wife]

One of my concerns with paying out of pocket for autism evals is--if we do the evals and the answer is "nope, not autism"--well, that is good to know, but rather minimally helpful to me. And I really don't have money to spend for something that is minimally helpful.

 

It's my opinion as a Communicative Disorders student that both the ABLLS and VB-MAPP deserve wider use outside of just the population of kids with autism. Really ANY child who is functioning at a typical 5 y.o. level or below in language and has concerns with one or more additional areas (social interactions, following classroom/group activity routines, negative behaviors, self-help skills, etc.) would benefit from having them run. They will identify appropriate goals for that child.

 

[Crimson Wife]

Based on research I have done, yes, the ADOS has been revised to reflect new criteria from the DSM-V. If there are specialists that are still using the old ADOS, that is definitely something worth looking into before hand!

 

There is a brand-new edition of the ADOS. A lot of professionals are grumbling about having to buy new kits and retrain on the updated protocol, but really, it's their job to use current assessments.

 

[Guest]

There is a brand-new edition of the ADOS. A lot of professionals are grumbling about having to buy new kits and retrain on the updated protocol, but really, it's their job to use current assessments.

 

I'm with you on that! Makes you wonder about a professional evaluating a child for autism, though, when said professional is not flexible or open to change enough to keep up with the times ;) Definitely good knowing that this is an issue to watch out for!

 

Locally, I assume a lot is regulated, but we shall see. So far we are still waiting.

[Crimson Wife]

I'm with you on that! Makes you wonder about a professional evaluating a child for autism, though, when said professional is not flexible or open to change enough to keep up with the times ;) Definitely good knowing that this is an issue to watch out for!

 

Locally, I assume a lot is regulated, but we shall see. So far we are still waiting.

 

The ADOS2 upgrade is expensive ($550-$650 depending on whether it is hand-scored vs. computer-scored) plus another $330-$500 for the training depending on format (video vs. workshop).

 

Additionally, a whole bunch of other speech & language assessment updates just came out as well. There's a new CASL (one of the most popular language batteries), a new Goldman-Fristoe (popular articulation test), a new Test of Narrative Language, a new Test of Problem Solving, etc. A clinic could easily be looking at spending $5k+ on updating their assessments and training their evaluators on the new versions. I'm hearing lots of complaints from SLP's who run their own small private practice as opposed to being part of a big hospital or school.

[Guest]

A clinic could easily be looking at spending $5k+ on updating their assessments and training their evaluators on the new versions. I'm hearing lots of complaints from SLP's who run their own small private practice as opposed to being part of a big hospital or school.

Ouch! That is rough! I hear you.

[Guest]

nm

Edited August 13, 2017 by Guest

[RuthAnnV]

We were on a waiting list in our state for Autism testing for five years. We finally paid the State University to do Autism testing. They had an income sliding scale, but it still cost $460. She was diagnosed as having Autism Spectrum Disorder, which we knew. Now we need to get therapy, but it isnot covered by insurance for those over six years old. We are in one of THOSE states that have very poor Autism coverage and a lack of services. :( I am buying my own curriculum and self-help books.

[OneStepAtATime]

We were on a waiting list in our state for Autism testing for five years. We finally paid the State University to do Autism testing. They had an income sliding scale, but it still cost $460. She was diagnosed as having Autism Spectrum Disorder, which we knew. Now we need to get therapy, but it isnot covered by insurance for those over six years old. We are in one of THOSE states that have very poor Autism coverage and a lack of services. :( I am buying my own curriculum and self-help books.

Hugs and good luck!  And welcome to the LC board!   :)

Edited June 24, 2017 by OneStepAtATime

[Guest]

RuthAnnV, I'm so sorry :grouphug:

 

Welcome to the forums!

[Guest]

A couple of resources you might find useful, both by Linda Hodgdon :

- Visual Strategies for Improving Communication: Practical Supports for Autism Spectrum Disorders

- Solving Behavior Problems In Autism: Improving Communication with Visual Strategies

I wish you all the best!

 

Edited August 13, 2017 by Guest