Behavioral evaluation/autism testing for teen?

[TrixieB]

Please don't quote, as I may delete.

 

My teen has been seeing a psychologist for several months.  Dc has come home from sessions upset lately.  Dc has given permission for what is discussed in session to be released to me.  I called the psych to discuss dc's post-session behavior... psych said that, long story short, they think dc is on the autism spectrum and recommend an evaluation, as dc will attend public school (at dc's request) and psych thinks dc may need accommodations for some classes/assignments.  Psych would not be the one doing the evaluation -- would refer to a couple of different places that can do it.

 

So.... here are a few things...

 

I know dc has some "quirks" for lack of a better word.  Dc has never been able to do an assignment which involves "pretend you are ___________" or "tell how you would feel if ______________"  I mean, completely unable to do this type of assignment, being baffled at what is being asked or ending up in tears of frustration.

 

Dc is unable to talk about their feelings.  They can say "I like (item/food)" but not "I feel sad about ____" and if upset about something, cannot verbalize WHY they are upset.  This has always been the case, but I never really thought about it before.  Psych says dc can talk about lots of things in session, but is unable to talk about feelings at all.  Dc either gives an anger-type response when pressed or else totally shuts down; psych says it's likely frustration at inability to understand or respond.

 

Dc struggles with time management, getting assignments done on time.  Even with a checklist, they can't remember to look at the list. 

 

There is also an inability to anticipate or dread new things... if I say, "Are you looking forward to (new event)" I get the answer "I don't know.  I have never _____ before."  Unless it is something that dc has done before.  Then I'll get a yes or no answer.

 

Rigid behaviors - certain things always have to be specific ways or done in certain orders.  

 

Dc acts much younger socially than same-aged peers.  They don't do well at small talk, and sometimes seem baffled at how to respond in social situations.  "Please" and "thank you" are just now becoming automatic most of the time... finally...

 

Handwriting is tiny and messy to the point of illegibility... even numbers.  I have tried to help with this, but nothing has worked.

 

But - standardized test scores are high, and grades for outsourced math/science classes are high.  Dc reads very well and is very verbal.

 

Basically I have no experience with autism - do my dc's issues sound like they'd be at all related?

 

[3_monkeys_mom]

Honestly, your description sounds a lot like high functioning autism or Aspergers (my own son was recently diagnosed with high-functioning autism - what would have been called Aspergers before they changed the classifications for autism). The inability to communicate their feelings, the rigidity of behaviors or the strong preference for things to follow a certain pattern, the difficulty with handwriting or other fine motor skills, and the difficulty in social situations (including having a hard time with small talk) are all indicators of high functioning or Aspergers.

 

People who have Aspergers are typically not delayed in terms of language (they may even have advanced language skills, using words not typically used by kids their age). They are also typically not delayed intellectually and often excel at topics such as science and math (knowing that autism is a spectrum and therefore there will be some variations among individuals, even those diagnosed with the same condition).

 

Does he have any sensory related issues (such as issues with loud noises, food textures or a very limited diet, issues with clothes such as strongly preferring or avoiding certain types of clothes)? Does he have a limited number of topics that he is interested in? These are additional characteristics often present in people with Aspergers (although not present in all individuals).

[TrixieB]

3_monkeys_mom,

 

Yes to noises - frequent complaints about:

 

- people talking too loud

- turn down the bass on the car stereo because the bass (not volume) hurts their ears

- high pitched noises hurt their ears

 

Yes to food - has a relatively limited amount of preferred foods.  Runny yogurt is OK, Greek yogurt is not, only certain flavors, etc.  Unwilling to try unfamiliar foods because they don't know what the food will be like. 

 

Yes to limited topics -- specific sci-fi shows, music/bands, comic strips, TV shows.  Has extensive knowledge about these topics and will discuss at length.

 

Yes to advanced vocabulary and science/math abilities, although math knowledge acquisition seems like it is slowing down a bit (compared to previous pace).

[kbutton]

Yes, and the good news is that a diagnosis will open up opportunities for help with social skills, behavioral help, and accommodations. I strongly recommend looking into an ABA program even though your child is not in need of as much support as some kids on the spectrum are (high functioning is not really the term used anymore--it's more about support levels, though I understand that it helps people get kind of an idea of where on the spectrum a person falls). A good BCBA will be able to help you hone in areas where your child needs support. Behavior is a broad term, it's not about acting out (though it can be that too). For higher functioning kids, the BCBA needs to be flexible and creative, but it can help a lot. Our behaviorist also does our social skills types of things, and it's a very good fit for her. She helped my son go from being able to classify things as positive or negative to having a variety of words to indicate feelings in himself and others. He also has a lot better idea what various kinds of body language mean, etc. He has a sky high vocabulary, but he really couldn't use it to talk about that stuff either. There are other professionals that do social skills, but I think having that behavioral background made the behaviorist aware of things that a general speech person might not realize is standing in the way of progress with someone who has ASD.

 

A full evaluation is likely to be helpful to you both. I would call and get a feel for different clinicians. If any of them say something like "sounds like your child is too social to be on the spectrum" or "your child makes good eye contact and has empathy, so your child is probably not on the spectrum," then run away fast and find someone else. :-) You need someone who is up on the current diagnostic criteria (instead of mythology) and who will do objective testing, not just talk to the child. Make sure you contextualize the things you say about your child--for a long time, people would talk to me about their kids' meltdowns. They had no real understanding of the intensity, frequency, etc. that we had such issues. You need to paint a real picture with explanations, if necessary, about exactly what is happening with your child. 

 

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html

https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria(this link talks about support levels as well)

 

This is a really good rating scale to get a feel for social skills: http://www.ocali.org/up_doc/Autism_Social_Skills_Profile.pdf

This is a site with a lot of information as well: http://www.ocali.org/ 

 

 

[PeterPan]

This is so textbook probably any psych could diagnose it.  I'm confused as to why your current psych doesn't do it and be done with it.  Yes, you'll want full evals.  The real question is what services you want at this point and who you want to provide them.  Academics are nice, but reality is his social skills and emotional regulation will determine his employability.  I wouldn't make the decision on school yet, just me personally, because in some schools he might receive minimal services.  It takes, at a minimum, 4 months to get an IEP.  Legally you should be able to walk into the school, make a written request, get the evals, get this done.  Reality is you need private evals first, the school will screw you, and then you'll be stuck in a fight over what his disabling condition is, whether he gets an IEP or 504 or nothing, blah blah.  Many people find the IEP fight takes a whole school year.  Seriously.

 

So from a parent/advocate standpoint, your goal is to get the diagnosis to get coverage (insurance, state funding, whatever) and then begin intervention.  He sounds like he could use some autism-specific services.  A BCBA would be the way to coordinate this.  They could work on executive functions, social thinking, perspective taking, all sorts of things.  Depending on who is funding this, they might be able to use a team approach or point to materials you could use with him at home.  There may also be social skills groups in your area.  

 

My suggestion would be you begin to use these private services ASAP and then work through the ps process.  Or make your written request for evals with the ps, get that going, and begin private services after they do their pragmatics testing, etc.  Thing is, the interventions and the IEP take time.  And you're not guaranteed the school would do anything for him.  They might or it might be sort of slap stick, just a little.  Might be a ton.  It really varies with the school.  The only way to KNOW you're getting appropriate services is to fund it yourself.  So if you have the insurance coverage or can get funding, that's the thing to look for.  You could continue your private BCBA services while he's enrolled in school.  There are materials you could use with him at home, materials from www.socialthinking.com  I would do that *with* the BCBA, not just by yourself, a team approach.  

 

The other thing you could look for, if the BCBA doesn't do it, is an executive function coach.  It's lower priority than the behaviorist (BCBA), but it would be another person to add to your team.  What you're looking for there is a certified educational therapist.  There's an org for them.

Edited April 10, 2016 by OhElizabeth

[TrixieB]

Thank you, kbutton, this is all very helpful.

 

I have a lot of phone calls to make.  We have started the referral process for the local children's hospital autism center, but there is a 6-9 month wait for the evaluation once the referral is finally in place.  Another option is the local university's center, which is a 3-4 month wait.  And dc's psych recommended a private practitioner, but I don't know that person's wait time.  Amazingly, all the providers are in-network with our insurance, but I have to find out what our evaluation coverage is, and how many visits per year, etc. 
 

[TrixieB]

Thank you, OhElizabeth.

 

Dc's current psych specializes in a certain area, which I think is why they are referring dc elsewhere for the evaluation.  Also, psych is relocating soon and we'll need to find another one anyway.  It would be 2+ hour round trip to continue to see this person, and it sounds like dc will need to have other types of services.

 

As for school, public high school is really the only option for next year and we have already enrolled dc.  Our long time co-op is unfortunately no longer tenable for reasons I won't go into here.  Dc has asked to go to public school.  I am just hoping to have some kind of accommodations in place, if necessary, before September.  I know the big picture is future employability and social interaction, but I don't want my kid to bomb out of school because they can't do some assignments.

 

This feels... very hard.  I feel stupid for not realizing sooner what was going on, but it really never occurred to me.  Psych said (not as a slam) that if dc were public/private schooled from the beginning, this issue would likely have been brought up long ago.  But because we could make our own accommodations, and did, I never picked up on it and it was the psych who said something.

[kbutton]

This feels... very hard.  I feel stupid for not realizing sooner what was going on, but it really never occurred to me.  Psych said (not as a slam) that if dc were public/private schooled from the beginning, this issue would likely have been brought up long ago.  But because we could make our own accommodations, and did, I never picked up on it and it was the psych who said something.

 

Late diagnosis is more common than you would think, including with ps and private schooled kids.

 

For school accommodations, I know you don't want your son to fail, but the reality is that if you go in "just asking for x,y,z," you might not be taken seriously when the time comes to get serious about what he needs. And he may do pretty well in school in spite of all that--you just want to be sure you don't shoot yourself in the foot by under-dramatizing his needs now, and going to the negotiating table armed with less than what you truly need. It gives the school ammo to not be nice later.

 

This is a situation where you kind of triage needs and move forward no matter what you do, but you want to make sure that your triage doesn't make something harder down the road.

[kbutton]

BTW, you will want to read this book. It's very good. http://www.amazon.com/gp/product/B00E81DHTS/ref=dp-kindle-redirect?ie=UTF8&btkr=1 

 

You need to know about the laws in your state as well (there are both federal and state guidelines that feed into this), but you need this book too. It's the people side of things.

[PeterPan]

What you maybe want to do is get on the wait lists for all three places and continue to solicit feedback locally while you decide.  Usually the psychs will call you and chat for 10 minutes to let them give you a sense of what they would do, how long they would spend, what tests they would run, and just whether you even like them.  It's VERY important to find someone who is not antagonistic about homeschooling.  Some psychs are, so that's something to ask straight up.  

 

As far as hospital vs. uni vs. whatever, I'd look at reputation, length of evals, what they'll be running, etc.  A private psych can have some strengths (more experience, not a student), but you'll then want to consider additional OT and SLP evals.  The SLP can look for language holes, pragmatics, etc. 

 

The school IEP process is going to take a long time.  Honestly, you should start now.  It *might* be that they'd actually do an ok job of it.  By law they're supposed to.  When it's this obvious, they should be able to run the ADI-R or GARS and get it done.  They might.  And if the results aren't seeming correct, you dispute and they pay for independent evals.  It's just a process.  At a minimum you're looking at 4 months, which means even if you start now and they just totally agree it's autism you're still barely done by fall.  Some schools will try to pull the stunt of closing for the summer.  If you make your written request NOW, then it starts the legal timeline. 

[kbutton]

Oh, and I recommend finding some books that talk about school accommodations typically offered with an IEP. Use it to work backward to describe your son's strengths and weaknesses and show how those things keep him from fully accessing his education. 

 

Kids in the Syndrome Mix of ADHD, LD, Autism Spectrum, Tourette's, Anxiety, and More!: The one-stop guide for parents, teachers, and other professionals by Martin L. Kutscher, Tony Attwood

School Success for Kids With Autism by Christine H. Barthold, Katherine C. Holman, Andrew L. Egel

 

Different Minds by Dierdre Lovecky

[TrixieB]

So I can ask for IEP and even though dc has not had evaluations yet, the school will have to get started on their part?  Even though dc isn't attending public school this year?

 

We will know soon which high school (open choice results haven't been mailed yet) dc will attend in the fall.

[HeWillSoar]

 

Maybe but not necessarily. We always suspected something was going on with our son but our concerns were always brushed off by the school AND the doctors.  One teacher told me, "He's fine.  I have seen kids with autism and he's not like them."  :huh:  They were well meaning but it wasn't helpful because the time I spent doubting myself was time I could have spent getting my son help.  It wasn't until middle school that things really became an issue with school.

 

So don't feel stupid or beat yourself up. Even the experts have trouble figuring it out.
 

Edited April 10, 2016 by HeWillSoar

[kbutton]

So I can ask for IEP and even though dc has not had evaluations yet, the school will have to get started on their part?  Even though dc isn't attending public school this year?

 

We will know soon which high school (open choice results haven't been mailed yet) dc will attend in the fall.

 

A request for an IEP is really a request for evaluations. Period. They only give out IEPs and 504 plans to kids they've evaluated or who have had private evaluations. Even with a diagnosis, they only will give IEPs and 504s to those who cannot access the curriculum because of their difficulties and/or are falling behind (usually at least 2 standard deviations from AVERAGE). If you have outside evaluations that are current (usually within the last year or two), then the school will roll those into their report. They will evaluate whatever you consent for them to evaluate, and you want to consent to it all to leave no stone unturned (this happens as one of the very first things, and it doesn't really look like a big deal form. But, if you don't ask for it all then, the school will say, "but you didn't ask..." They may also ask you to state what you suspect is the disability and put that on the form. Tell them ASD, but that there might be other LDs, Lol! You want to cover all the bases and make sure they look for more.). If you have additional evaluations that come up later privately that contradict or add to the school evaluations, I have no idea what the school is obligated to do with that if the IEP process has concluded or is past the ETR stage (the stage where they talk about what the test results mean and whether the child is eligible for services). They are likely not obligated to do a durn thing. This is also something you need to discuss at the planning/consent to evaluate meeting--if you want them to use the private reports, you need to state which ones, and you need to turn over copies of them to the school ETR team (usually headed by the school psych). You don't have to bring it all on the first date if you want to hold your cards close until you see how they behave, but you can't hang onto the information in a way that will delay the process (unless you need to stretch it out, but that can look bad). 

 

We have done the process two ways--both times we had already completed private evals plus consent to have the school look at a few things. In one instance, we had older but still valid evaluations, and we were in the process of getting updated evals. We worked those evaluation dates into the school's timeline, and we could have simply used the first set if we wanted to, but we wanted more tests done than we had the first time, and our first evals had results all over the place--there was no rhyme or reason to what they turned up. (Mind you, that scenario was not for my ASD kiddo but for the other one.) We also pulled in private speech evals. Our first speech evals (also private) said my son was fine and would grow into better speech; his speech continued to deteriorate, so we needed a more thorough eval. In that case, instead of asking the school SLP to evaluate, we wanted a much broader set of tests, including motor tests for apraxia, which the school SLP might not have picked up on (that's a whole side topic, not a slam on the school SLP--she's wonderful, honestly).

 

To start the timeline rolling for school evaluations, you must submit a WRITTEN REQUEST for EVALUATIONS for an IEP. You cannot just talk on the phone. You cannot submit a written note that you are concerned and want feedback. E-mail to the right person usually constitutes a written request, but you might check in case that varies by state. Also, you can do this during the summer, and the clock does start during the summer. 

[PeterPan]

Federal law *requires* them to evaluate.  Thing is, there's this little loophole where you have to give evidence/cause of the evals.  So you look up the legal timeline on your state dept of ed website.  You'll make the written request, saying you suspect autism and whatever else.  They have 30 days to schedule a meeting.  At that meeting they say yes you have evidence to do evals or no we don't have enough evidence right now.  They'll use that to say enroll him, we'll watch a grading period, THEN we'll decide whether he needs evals.  See the trick?

 

Also, look at your state law for evals.  Right now you are not enrolled, so your district of residence does the evals.  Once you enroll, at least in our state, the school you go into does the evals, even if it's in a different residence.  So you can, legally, get situations where one school evals and another writes/implements the IEP.  It's more to your interest to get that timeline rolling.  You can call the school you get into and see.  Sometimes schools do a really good job!  Really, they do sometimes.  And sometimes they're so incompetent you'll wish you had never tried.

 

The IEP timeline is 120 days, if all goes well, and an autism diagnosis often requires 3rd party evals or gets contested.  I would encourage you to pursue private evals, because you'll probably need them to keep this rolling.  

[Crimson Wife]

bumping

[TrixieB]

bumping

 

If you are wanting to know what happened:

 

dx of ASD level 1

 

Kid has recently told me that they think they have some other issues which are on the "comorbid with ASD" list so will have a psychiatrist eval this month.

 

Kid is in public school, was given 504 but not IEP.  It's a bare-bones 504; this may change after the upcoming eval.  I hope so. 

 

Kid does well in some classes, has dropped others, struggles with some academic subjects not due to the content but due to inability to do the assignments and ends up with a "pass" grade in those because of the 504 (actually has a failing percentage for the class but kid has excellent understanding of the material, just can't do the assignments).   Classroom environment also causes issues - noise, commotion, unclear instructions, etc.  No possibility of graduating on time and I am worried about dropping out. 

 

We requested, in writing, eval from the school TWICE last year (August 2016, and again a few months later).  We got the 504 and that's all.  They didn't actually tell us kid got a 504; we found out about it in the summer when the report card arrived and one of the class grades referenced it; we didn't get a 504 copy until last month.  It doesn't reference any evaluation or educational testing.  I am wondering about learning disabilities but... do schools test for those?  Or do we need to go private?

 

 

 

 

[Storygirl]

I'm sorry the school has not communicated well with you. That's frustrating!

 

I'm concerned that they are not following the federal law. Are you in the US? After you request evaluations, they are required to meet with you and have you sign a form. Either it would be a form denying evaluations, because they do not agree there is evidence of disabilty, or a form on which you as the parent agree to the evaluations and check off what areas will be tested.

 

They are required by federal law to do this within 30 calendar days of your written request to the public school. Are you dealing with a public school or private?

 

Also, your signature should have been on any 504 document before it was put into place.

 

In order to insist that your school district follows the law, you will need to educate yourself on the federal IDEA laws, as well as any state guidelines. You should be able to google and find the information, to start. You can also read books.

 

It sounds like you are going to have to advocate hard for this child. The public school absolutely does test for learning disabilities, and I can't figure out why it hasn't happened yet if you made a written request. Did you send the request to the special education department of the public school, or was it to a teacher? If it was posed as a question to a teacher, that was not sufficient, and you will need to send it to the right person. If this is a private school, you need to send your request to the local public school, because they are the ones with the mandate to evaluate.

 

I'm not sure why testing hasn't happened yet, but you can follow up and make sure it happens. Everything that the school does is supposed to be documented in writing, and parents are equal members of the decision-making team.

 

It is absolutely astonishing that he has a 504 without your knowledge. That is not even legal.

Edited October 6, 2017 by Storygirl