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What tests should be included?


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Still trying to find a provider and have it narrowed down to a few and hoping one will fit our needs.  I'm overwhelmed with all the types of testing and one practice does one thing while another does something entirely different.  I'm looking to confirm a diagnosis of dyslexia/dysgraphia, could have short-term memory issues, could even be ever so slightly on the spectrum - which tests should they be doing so I don't pay out of pocket and not get what I needed?

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The dysgraphia they'll decide by doing IQ and achievement testing and watching him work. This recent time, the psych had my ds trying to write sentences. They literally just wanted to see what would happen. The working memory will be part of the IQ testing.

For the spectrum, that's harder. You need to decide if you want questionaires or if you want an ADOS. I like the ADOS, because it busts through things like not having enough people seeing the behaviors enough to fill out questionaires. You just have to find someone who's really excellent at it. Is this person over 18? Some psychs switch to informal at that age and don't use questionaires. If you're trying to get paper trail for accommodations and ASD is on the table, then yeah finding someone who does it a lot would help.

If you want, you can describe the practices and we can give you feedback.

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I'm having a hard time searching for a neuro psych - perhaps I'm searching the wrong title on my insurance website.  I figured I'd start there because it'd be covered and then work up from there.  Yes, this person is 18.  After more internet searching I found this option:  https://www.mindwell.us/psychoeducational-testing/

Not covered under insurance I'm sure but is this what I'm looking for.  I know that this young person has major dyslexia/dysgraphia issues.  I also know that he struggles with short term memory - a small lesson practiced on Friday is a complete reteach by Monday.  I'm concerned about some social issues that I've witnessed over time.  At 3/4 he used to just drop to the floor in a store and refuse to move and cause a scene (I learned the art of abandon cart with this kiddo), at 7 he'd get mad and completely empty the shelves in his room, ever so gently.  He socialized fine in a group of kids, performed on stage in a dance recital or Christmas play but did quirky things like run off the baseball field in the middle of the game (run far far away), and when he turned 17 he invited a friend to have dinner and cake and at 10, after presents were opened he said "ok, I'm going to bed."  And his friend was still there enjoying the activity (I had to drive him home but made ds go for the ride).  While we "joke" about it he, to this day, does not see any issue with his actions that night.  These are just a few issues that pop into my head in regards to his quirkiness.

I'm withholding graduation for this kid because he still struggles and can't write a paragraph yet he is writing some type of story.  He refused to finish the book portion of the drivers ed because he failed one quiz and thought the whole process of how you earn a license was "stupid."  Now this is the kiddo that wants to be in the military.  Reads everything related to military generals, non-fiction, etc. and knows his history.  We met with a recruiter to get an idea of the process and he did a short online screening test and shocked me by passing the English part (no writing) but ran out of time on the math.  Dh would prefer he have a degree and go officer route but I'm not hung up on that.  But when he learned he'd need his drivers license in order to move further in the process you'd think that would have motivated him but nope, not one bit.

My current plan is to attempt to keep his math skills up and really work full force ahead on writing - and maybe I can get him graduated by Christmas and perhaps attending the local CC next January.  At this point I know he can not pass the entrance exams because you have to write an essay.  I don't care if he had to take a developmental course but at this point he can't even place for that!  I do believe if I could get his writing much stronger and accommodations in place he could at least give the CC a semester try and see how that goes - so here I am trying to find the right provider to help meet that goal.

I just can't help thinking there is something more going on here but don't know what.  He has a heart of gold and basically when you ask him what he wants to do with his life he says "I want to help people."  Trying to make that happen.

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What happens if you look for someone that specializes in autism? 

We got screwed by a neuropsych, so I'm not really in the love neuropsychs category. They sorta try to do a lot of things, bill at a high rate, and don't necessarily do any of it well. What you need for the writing issues is an SLP who specializes in autism and expressive language. They can do Story Grammar Marker with him and nail that. So if you pay $250 an hour for a neuropsych and he runs the CELF, what did that tell you? Squat. If you go to an SLP that bills at $125 an hour around here and they run more extensive testing (Test of Narrative Language, CELF Metalinguistics, etc.), then maybe you can move forward with some interventions.

The neuropsych will probably do some paper questionaires for the ASD. It sounds pretty obvious with what you're describing, like a really classic scenario ticking through the boxes. We used a psych this time who only billed $135 an hour, who is technically an ed psych, but who specializes in autism. Like she did 8 sessions, tons of hours, focusing on the autism question. So it's not what they bill at but what they specialize in is my point. 

It does sound like he needs some more bake time. That would give you time to do a year of interventions before graduating him too. Social Thinking materials, Story Grammar Marker, etc. I wouldn't graduate him to the cc too quickly, because they aren't going to be any more prepared to handle his disabilities. This kit is on sale and would get you started. https://mindwingconcepts.com/products/thememaker-quick-start  If you call them when they're open, you'll get to talk with the lady who developed the materials, MaryEllen Moreau. They also have a lot of videos on their site you can watch for free to totally come up to speed on the methodology.

Here's what you'd be wanting for social thinking https://www.socialthinking.com/Products#f:age=[ages 14-18]  If you can find someone who uses the materials to do them with him, it could be good. Just hearing it from more people, hearing it afresh, hearing it in a new setting can help. He sounds like he'd take to the learning really well and want to apply it.

I'd definitely consider the SLP eval from someone who sees a lot of autism. You're likely to learn a TON and get actionable information. There's also the TOPS (Test of Problem Solving). There are just a bunch of things they could do on him that a psych won't. Well that's not true, *some* psychs who see a lot of autism are running these tests, but more commonly it's SLPs. Around here, neuropsychs are jam-packed, fast food. They use assistants for the testing sometimes, do a pat list, boom done. It shouldn't be like that. They're supposed to be top tier, one stop shop, but that doesn't mean they are. To me, given that ASD is on the table, I'd suggest looking for someone who specializes in ASD, irrespective of label, and getting very thorough SLP testing with an SLP who sees a lot of ASD.

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Well, I've had my pity party (facebook and all the graduation photos of my ds' peers) and now must regroup, restrengthen and energize myself and get this kid back on the road to success.

At the risk of sounding "not smart" - what is an SLP?  I'm searching on my health care provider's website to find possible providers and that is one fun activity let me tell ya!  I did a search on Autism providers near me and found a few options - maybe - but may run into the issue of them being pediatric and since he's 18 that could be a problem.  I figure I'll call the first one and see what they say or if they can recommend a local provider that will fit the bill.  I just don't know what do here.

Should I call the local university that offers testing/psych options or avoid?  I've never felt so fish out of water and unsure of where to turn for help - oh, except a few years ago, but with hearing impairments it was a lot easier getting the help and knowing who/where to call.

 

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SLP=speech language pathologist. I'm being told by our behaviorist that many kids with autism are kept by their parents in the system a bit longer (till 20, max 21) to continue to get them services. I think if you find an SLP who deals with a lot of autism, the 18 thing won't be an issue. It's an issue for tests, because he begins to max them out. It won't really matter. Like they gave my ds the lower/preschool level of an expressive language test when they accidentally ordered that instead of the regular version, and he STILL failed it. So even if the Test of Narrative Language ends at 18 or something, it will still give useful data given that he's likely to struggle on it. 

I would not go through a university for your psych testing, if you can avoid it. This isn't the time to use a student. Find some wizened person who's been doing autism and the ADOS and whatever a long time. One of the psychs we used didn't do the ADOS but had his own set of things he did that he knew would elicit behaviors to let him tally them. There are many ways to skin a cat. I'm saying go for experience and somebody who's going to take their time.

I'm sorry it's such a hard time of year. We did things sort of non-standard with my dd, sending her on a trip instead of having a graduation party, and it didn't really feel like we had ended with this amazing whatever. But life has gone on. With my ds, we'll probably give him an extra year or two. He's just really going to need it, not just for academics but personally. My dh is trying to have him start working (informally, like pushing a broom, just to be there and get some experience) in our business, and ds was totally stressed out. We're talking through it, but there's a lot of life to be lived. It's stuff we figure out as we go. To me, I really appreciate the successes, like that he could acknowledge nod his head and tell me he was stressed, and we just keep swimming.

Does your state have autism schools? They're another resource. They'll sometimes have psychs on staff or people they refer to. That's how we found the one we used this time. That's all she does is autism, so her ability to recognize things and put it into words and connect dots is strong. Also, this is going to sound weird, but in the autism community they don't necessarily diagnose a lot of SLDs separately. If it's autism, then some of the learning issues flow from the autism. When I first started, I really wanted those things diagnosed separately, but it sort of slowed us down. The people who label the SLDs aren't going to be the autism experts always, because it's sort of a different community, different path. The autism experts will label SLDs, but they'll also point out that some difficulties with academics are normal/expected for autism. 

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Do you want an ASD diagnosis? 

If you are just looking at dyslexia/dysgraphia, the graduate clinic at your local university is an option. My oldest son is doing his PhD in educational psychology right now and from what he has told me about their clinic, it sounds like it would be exactly what you need. But, I'm sure every university's clinic is different, so I would call and get a feel for what they offer. Otherwise, I would look for an educational psychologist (EdS or PhD) who tells you that they will conduct a "psychoeducational evaluation" and that it will take 6-8 hours. You need an IQ test, an academic achievement test, and a few additional tests in areas where he struggles. 

If you are looking for an ASD diagnosis, I agree with PeterPan that you need an ASD specialist. Unless an educational psychologist has a huge amount of experience and extra training in ASD, they are unlikely to be qualified to diagnose it. The university clinic is definitely not the place to seek an ASD diagnosis.

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I"m not sure what the answer is the above question from Ivey.  I know, without a doubt, that he struggles with dyslexia and dysgraphia in a very big and challenging way.  I've actually been successful in helping him achieve reading success and he is reading adult-level nonfiction novels (anything military).  Dysgraphia is another story.  I've attempted numerous times over the years to fix the hand grip but with no success - mostly because he gets extremely angry and frustrated and then shuts down.  I know he will need supports at the college level if he even has a chance at success there but then I begin to think about the bigger picture of his skills - socially and educationally.  He can not write an essay (which is needed to pass the entrance exam at the local CC - not mention needed in the classes).  I've done everything possible and yet a paragraph to him is 2 sentences or maybe 3 but nothing goes together.  And he can't see that they don't go together. 

He is hyper focused on what he enjoys-military stuff.  He plays a few computer games but nothing that consumes his time in large quantities.  Over the years we've tried sports - baseball, basketball and Parkour and all produced/resulted in troubling behaviors - frustration starts and it goes downhill from there.  If he likes something - like a professional baseball team - then he is watching it any time he can.  I've suggested options like the Young Marines, CAP or Police Cadets to provide some exposure to a military/police environment but he completely fell apart and got angry and wouldn't discuss further. 

There is something about him that just doesn't make sense to me.  My dd, who is studying to become a teacher and has taken numerous pysch courses and has worked in the schools, agrees with me that something isn't right.  He really seems to be "on the spectrum."  She has been his instructor or watched him during a Parkour lesson and has seen behaviors that don't fit with everyone else.  Instructors have had to come and get her so that she can talk/calm him back into the class or give him proper instruction on a move because he wouldn't listen to anyone else.  Others have said he's "different." 

I need the dyslexia/dysgraphia diagnosed so he can get accommodations for CC but that won't help if he's got more going on mentally, socially, etc.  I really believe there is more going on but don't know where to look/call to find the help.  I called a provider yesterday (takes my insurance) and they are all booked up and taking no new patients. 

I recognize that typically this is most likely caught earlier in life and people may have been thinking - why didn't she do something earlier.  Well, his ped ignored the behaviors from when he was 3 on up.  I'd bring them up at well visits and I was assured that this was just part of who he is developmentally and that he'd outgrow the behaviors.  Some he did - like collapsing in the middle of the grocery story - but those behaviors were replaced with defiance - I'm not going in the store, getting out of the car, you can't make me to do xyz.  Fast forward to the past few years when I could have been making calls and figuring this out and you'll have found me in the throes of a huge serious family issue - which eventually resolved this year.  So here I am - trying to get him help and not sure how to go about that.  Really trying to use our health insurance coverage as a first resort but may need to go out of pocket (my dh can only work so much overtime!).

I agree that I wouldn't want an ASD diagnosis if he wants in the military but it wouldn't be fair to set him up for failure if he did indeed have those issues.  He could be sent home from boot camp - shamed and discouraged and that would be even worse than trying to find a new path in life that would allow him to achieve personal success.

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Heidi, no one is faulting you here. Yes, everything you're describing is spectrum. Have you considered his employability? My ds seems sort of like your ds. He's VERY into all things military/weapons, has language and compliance issues, etc. My ds qualifies with our county board of disabilities, because they look at a combo of 6 (I think? I forget) parameters. The SLDs are on that list btw. The combo of disabilities is going to make my ds harder to employ, and one of the reasons I made sure my ds was qualified with the board is because I want their employment services. Beginning at 14 they will help him have work experiences. Your ds is not too old to be receiving these services. I hear you saying paragraphs and college, but the thing that is the real elephant in the room is his ability to hold a job. Under-employment and un-employment in the spectrum community is HIGH. Even getting him through college will NOT guarantee his future or ability to hold a job.

2 hours ago, 1shortmomto4 said:

I agree that I wouldn't want an ASD diagnosis if he wants in the military but it wouldn't be fair to set him up for failure if he did indeed have those issues.  He could be sent home from boot camp - shamed and discouraged and that would be even worse than trying to find a new path in life that would allow him to achieve personal success.

You are very correct on that. There are people who do well with the high structure of the military, but it sounds like your ds needs more support and that it wouldn't be a good fit. My ds is into all things military/weapon, but he wouldn't be a good fit in the military. His social thinking and ability to navigate dynamic (complex, fast-paced) situations isn't there. 

Fwiw, for my ds I'm looking at maybe a technical college with some kind of diploma that would allow him to do a hands-on job maybe 20-30 hours a week. I think he might be able to handle part-time employment like that, with the remaining time for hobbies. He could surprise me, but I'm just saying I don't expect it. My ds has a gifted IQ, but he can't regulate his body to stay calm for long, long periods of time. It is stressful to him and causes him to shut down. There's just a lot of reality hits. On that writing, that's not a small/quick fix. It might not even be WORTH fixing at this point. Maybe you look at paths that don't require writing. 

The psych you choose hopefully can do some career testing and give you guidance. You're looking at parameters like noise, how fast and dynamic the situation is, what kind of problem solving is required, etc. So my ds needs a quieter environment that does not require novel problem solving (except in his area of special interest, which is more like a creativity thing), that has some social (he's socially motivated) without being too social, high predictability without being boring. 

Gotta scat. You're doing the right thing. Go forward. I hope you find someone who can do you a good job, someone who will slow down and really talk things through. If you can find someone with a lot of experience with autism, they're also going to be able to give you that long-term perspective, what to prioritize, where this is going, etc. You've got very real issues coming here and if someone just diagnoses some SLDs and hands you a list of resources, it's not really going to address all the things you're worried about. It will be worth it to pay for someone who has enough experience to give you some serious counsel here. That's what you're wanting. 

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Just wanted to update - still haven't found a provider although I did speak with the top rated one in the area that receives consistent praises. The person on the phone was absolutely wonderful and could get things started in August - all for the grand price of $3600.  Is this a typical cost or just particular to my area NE area of the country?  She suggested I call my insurance with particular billing codes to see if they cover those codes - they do but the caveat is this provider is out of network so they don't cover.  If I can find a provider who is on the list then I'm paying $10 copay.  Insurance sends a list of Behaviorial Therapists - not even convinced this is the right provider but quickly find out they don't do what I need or they are not taking on new patients.  The only places that seem to be an option from the list are these "box store" type offices where they take every and any insurance, especially those ordered by the court, and the reviews are beyond awful!!!  After scrolling through the list I found this lone provider who has received outstanding reviews and I've emailed the office - waiting to hear back, fingers crossed.

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Psychs usually bill by the hour, so ask how many hours they'd be spending in testing and what they're billing per hour. They're going to bill for report writing. So like around here, they might plan on billing 10-12 hours total for an eval. That would be just a common, ballpark range to expect. So then if the psych is billing at $250 an hour, that's how you get to a high pricepoint.

Dunno on the insurance, sigh. I hear ya on wanting to only pay the copay, lol. Yes, the right fit for behaviorists will be even harder than the psych. It's a really personal thing with who you fit well with. It's a working relationship, collaborative. I hope the person you wrote turns out well. It's going to be less common for them to have experience with older kids, yes. Many are going to be working largely with kids before school age, because then the school takes over services. The nice thing is, you pay as you go. If it isn't a good fit, you walk.

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