Should I push for diagnosis?

[maize]

Please don't quote, I want to be able to delete details later.

My fourteen year old son has had neuropsych evaluations in the past that yielded diagnoses of ADHD and anxiety. He also has a tic disorder and what I think is selective mutism, as well as a tendency towards OCD. He is very socially awkward, tends towards rigid thinking, and generally presents work a lot of ASD characteristics.

Last year he did the ADOS evaluation, the psych did not think he met the qualifications got autism. And yet for years people ranging from our pediatrician to parents of kids on the spectrum have told me he presents as having ASD. I know neuropsychiatric diagnosis is quite subjective, I've wondered if just taking him to someone different to be evaluated would told different results.

I just don't know if there is much benefit to doing that. It might give us access to more therapies, but he doesn't engage well with the therapies we have done--right now he is working with a speech therapist on pragmatics but he sounds half of his therapy time non responsive. 

The primary advantage of an ASD diagnosis might be giving other people a comprehensible frame of reference for understanding his social awkwardness.

If he is borderline though I don't want to push for a diagnosis that might not in fact be accurate.

Things I see that make me think potential ASD:

He has never made friends with other kids his age. He can sometimes join in something they are doing, but he doesn't talk with them. He very rarely engages in normal conversation about anything personal (his thoughts or feelings or experience). He researches stuff he is interested in--dinosaurs or sea creatures or bugs--and makes lists of characteristics and memorizes lots of details. He gets extremely upset when people don't behave the way he expects them to behave.

I feel so lost, I just don't know the best ways to help him.

Edited November 12, 2019 by maize

[Miguelsmom]

 Yes I would push for another evaluation. Sit down and document all your concerns from newborn to now. The more information the dr has the better. 

[ktgrok]

Yes, I would push. If nothing else that paper trail helps with accommodations if needed later on. 

Also, have you ruled out autoimmune issues? Some of that stuff - anxiety, tics, OCD, etc can be related to PANDAS/PANS, Lupus. Celiac, etc. I'd definitely do a google for neuropsychiatric autoimmune stuff. 

[Storygirl]

DS15 was just diagnosed this year, and the psychologist told me that she frequently gets cases where teens have a long list of other diagnoses but not autism, and she said it seems to her that practitioners sometimes tiptoe around, looking at things symptom by symptom, and are reluctant to make a bigger diagnosis. She did run the ADOS on him for the first time, and he did score in the diagnostic range.

The ADOS is subjective, so having someone else run it might end up with a different result, especially if he was on the line. I think the psych told me that she needed a score of 7 to diagnose. If you know the score that your son received, that might help you get a picture of how close to the border he scored.

The diagnosis did not change anything that DS deals with, of course. But it can qualify him for additional services, and as he approaches adulthood, we wanted to make sure that he has assistance other than from us as parents to launch into adulthood.

DS has what also could seem like selective mutism. He is chatty at home (about his interests) and with friends (he has finally developed some friends at school, though they don't socialize otherwise). But around other adults, he reverts to yes/no answers and says as little as possible. We are specifically worried about that with regard to employment.

DS qualifies for services through our county. But the most helpful thing so far is that he qualified for vocational rehabilitation services through our state. Our state has a job training program for teens at risk. This last summer, DS took a month long training course in job skills, and they also visited various job sites to see what teens can do at work. Next summer, he will be provided with an actual paying job for five weeks, in a small group with other teens and a job coach. If he does well at that, the summer that he is 17, a job coach will help him find and apply for his own job.

Services like that are so worth having the diagnosis, for us.

Also, his tendency to go silent is something that we are working on from several angles. He gets speech therapy at school, but it's not enough to address all of his communication needs, so we are planning to have him do some private work, as well.

DS also hates therapy, because he has to talk. But we recently found him a counselor who has experience working with those on the spectrum. This guy says that he considers bonding with the therapist to be 80% of what results in a good outcome. That is exactly what DS needed, and he is actually talking some to this counselor each week. It's still hard to get him to talk, but they are working on it.

DS has hated and rejected therapy before, so I was very nervous about trying again. I did not want to add to his negative impressions of accepting outside help. But so far, so good. Having the diagnosis to help explain what is going on is helpful, in that people who are experienced at working with those on the spectrum will have knowledge of techniques and an understanding of how to connect that a general psych may lack.

I felt the same as you, that I didn't want to be chasing a diagnosis, and we put off getting a second opinion for five years. But I'm glad we did it.

You may want to contact your county board of disabilities to see what they need to qualify him for services. And someone there should be able to tell you how to connect with other programs through the state. We've found that it can be hard to figure out what kind of things are out there to provide help, and sometimes you just have to start with one person and ask them for suggestions. (That first person for us was the special ed coordinator at DS's school.)

[Storygirl]

Getting help preparing for employment is our number one priority. Because DS will not be going to college, he needs to have some work skills by graduation.

But there are other things that he needs help with, and having the diagnosis makes it easier. Driving, for example. DS also has ADHD and very weak visual spatial skills, so we expect driving to be very hard for him. Getting his license and being a good driver will make having a job and being independent much, much easier.

The county and state services will help pay for driving services. So, he is scheduled first for an OT evaluation to determine driving readiness, and the county will pay for a portion of that bill. If he needs OT to get ready, and if our insurance won't cover it, the county can help pay for the additional OT. If he can't pass the road rules test to get his temps, the state will pay for a private tutor to help him prepare for the test. If he needs adaptive driving lessons once he has his temps, the county can help pay for those. We've been told that it can cost $5000 or more for these services, so we are glad to be able to have help with that. DS does not take instruction well from DH and me (we can get him to cooperate usually, but he gets angry and it's frustrating for everyone), so we are not sure that we will be able to teach him to drive.

DS can also get help from the county with personal skills, like learning how to shop for food, prepare meals, clean up after himself, etc. If he is unable to drive, the county can provide transportation to work or appointments. After he ages out of the teen services and is expected to be more independent, he can get help paying for medication or therapy appointments, and he can have a job coach and help with finding living arrangements, if needed.

Although we consider it our primary responsibility to build these skills, DS is delayed in some areas, and sometimes he can learn better from someone outside the family.

[PeterPan]

You have two questions there— how to help him and is there autism. As Story said, he should probably get a global explanation, yes. And getting access to transition services would be huge. 

Then as far as helping him, it’s no small irony that SLPs push language on someone with anxiety and mutism. What would you change if you called it autusm? Maybe finding a BCBA who specializes in teens, trying AAC (yes), and being more naturalistic? There are behaviorists who are more naturalistic. If the SLP is raising his fur maybe look for more options? 

You could blow things out of the water and come to OCALICON next week. Come together, find more answers. Meet me. 😁

Have you talked with your county board of disabilities? 

Edited November 12, 2019 by PeterPan

[PeterPan]

And yes psychs will diagnose in spite of the ADOS. People learn masking skills and can fake it out at this age. There are some psychs doing modified but they change it up to bust through learned strategies.

 

[Storygirl]

The services available will depend on where you live and also what each organization determines that the needs are. The above are just examples of things that we've discovered in our area so far.

I also thought it may be helpful for DS to be able to advocate for himself by naming his diagnosis, should he so choose. One of the problems for employment for him is that he can come across as uninterested or unwilling, when really he has communication barriers that make him appear to not care, even if he does (he has a flat facial expression and does not interact much verbally). He also can misunderstand what to do and fail to ask questions. Employers may be confused by these things, and we thought that it may help him to be able to say, "I am on the spectrum." Whether he will want to or need to or not, I don't know. But it's something that might help him. It's an option now for him, whereas it was not before. His previous list of diagnoses was long and cumbersome, and  it would not help him advocate for himself very well by naming them.

Many people do not disclose to employers. It's a personal choice, of course. Sometimes employers will know that disabilities are at play anyway, if job coaching or other services were involved when they obtained the job.

But having the diagnosis does give that option, should DS choose to disclose.

[PeterPan]

Anxiety meds, anxiety behavior strategies. Jen Minahan is s BCBA who specializes in anxiety, do get her books. 

AAC to decrease anxiety and see what is a language disability. If can’t get it out even with AAC, that is another game.

[maize]

3 minutes ago, PeterPan said:

Anxiety meds, anxiety behavior strategies. Jen Minahan is s BCBA who specializes in anxiety, do get her books. 

AAC to decrease anxiety and see what is a language disability. If can’t get it out even with AAC, that is another game.

What does AAC stand for?

[PeterPan]

Total aside but they’re using TMS for autism. Not saying I recommend that but they are. Have you thought about running genetics? I’m pairing your dh’s depression and ds’ anxiety and saying different manifestations if same gene.

[PeterPan]

7 minutes ago, maize said:

What does AAC stand for?

Augmentative and alternative communication. It’s not only for nonverbal people. My dd uses tech when her language drops. We tried LAMP on my ds and he couldn’t form sentences. Deep language disability that you couldn’t see for the amount he had memorized.

[kbutton]

Having a global developmental disability that can be listed is a game changer in terms of funding or supports, especially if there is no physical or cognitive disability. ASD is considered a pervasive (and global) developmental disorder. 

Most states have a formula of some kind of global/developmental problem + cognitive + problem with independent living skills to get to a level of funding. They will look at "side" diagnoses like ADHD, tics, etc., but the developmental disorders are the clinchers that take it to the level where funding or supports are given. Often you need two of the three things in that formula. Without and ASD diagnosis, you probably have just the independent living skills issue. 

Trying and failing at therapy is data, honestly, and it would be nice to have that documented in a case file for where he needs supports in case he needs supports for jobs and such later.

Really, I think a diagnosis would be nothing but helpful.

[kbutton]

I would also add that there are many supports that you have to beat the bushes for vs. having someone just tell you about them or offer them. You'd think that county board of DD help (as it's called here) would be more obvious to people, but it's not, and in many cases, the schools are the gateway to those supports even though you can seek it out yourself. It's just easy for the board to partner with schools. Some schools are VERY gatekeeping. Some board of DD people are gatekeepers. Other times, they are both really accommodating. You just don't know.

But a diagnosis means you are eligible for more--the connection part isn't necessarily going to be automatic unless you get a psych that has connections and has really been around the block a few times. It's just a different job from connecting to services.

[Terabith]

For what it’s worth, my ASD kid has passed the ADOS three times with a score of zero.  Not borderline.  It just doesn’t show up on ADOS.  But people who know her and know ASD are pretty unanimous, just going by the diagnostic criteria.