Ds16 finally got an ASD diagnosis. Next steps?

[maize]

This kid has always struck me as spectrum-ish, but past evaluations didn't yield an ASD diagnosis. This latest evaluation did, pretty definitively--I think the social development gap is more obvious than it was when he was younger and a lot could be seen as anxiety and ADHD.

I'm wondering what I should be looking into in terms of plans and supports and resources. He turns 17 this summer, he isn't far from adulthood.

Edited March 3, 2022 by maize

[kbutton]

Social skills/language and life skills are really important.

Do you think he's going to need any of the following:

• A special needs waiver? This would provide services for him through whatever your state's developmental disability services department offers with regard to life skills help, medicaid, supplemental income if he cannot hold a job well or is underemployed?
• Help from the state vocational rehab people? Here it's called Opportunities for Ohioans with Disabilities. It's not the same as a waiver, and it can be used with the waive or on it's own. It's about smoothing hiccups/barriers to employment. They might provide vision aids, mobility devices, training, etc. I have a relative that has used them to get mobility devices at work due to having MS.
• Accommodations for ACT/SAT or college services?
• An IEP (or 504) so that he can access funds available in your state (not applicable in a lot of places? This overlaps both with all of the rest---an IEP and/or 504 can pave the way for those other services, but sometimes the school is not helpful. 
  The other important thing about an IEP is that it can also give you creative ways to extent high school where it's needed. Obviously, as a homeschooler, you can graduate how you want to. With an IEP, the student is entitled to FAPE until the age of 22, so if you have a child that is supposedly ready to graduate, but they don't have the lifeskills to hold down a job, they can stay. This comes in really handy with vocational high schools. We have friends whose son was diagnosed at about this age, and he was poised to graduate the next year from a vocational program, but it was expected that his social skills were going to make that specific line of work impossible. The IEP allowed him to go back and finish a different program by deferring his diploma. 

Your answers will help people give more tailored advice. Two of the three are time sensitive---vocational rehab is not necessarily time-sensitive, but an IEP almost always helps move services of any kind along. Vocational rehab can kick in at ages earlier than employment depending on the issue (especially for something like vision, wheelchair, etc.).

The school system will usually be motivated if they think the student is not going to be able to hold a job without intervention, IME. IEPs for students 14 and older(?) requires a whole section on transition services for college or the job world. 

Also, did they give him a support level along with his diagnosis?

People are more likely to answer on the LC board vs. this one.

[kbutton]

I also have strong feelings about language testing and language needs for teens with ASD. It's often overlooked, missed, or underserviced.

[maize]

He's had an IEP for years and has been receiving speech therapy; I'm not sure when his next regular review is due but if it isn't soon I know I can ask for a meeting.

There's a crazy long waiting list in my state for the special needs waiver--I've heard people spend years on the waiting list.

I will follow up on some of these other suggestions.

[kbutton]

4 minutes ago, maize said:

He's had an IEP for years and has been receiving speech therapy; I'm not sure when his next regular review is due but if it isn't soon I know I can ask for a meeting.

There's a crazy long waiting list in my state for the special needs waiver--I've heard people spend years on the waiting list.

I will follow up on some of these other suggestions.

Yeah, the waiting list can be crazy, and each state handles things differently. If he needs it, it's better to be on it. 

I am glad he has an IEP. That is a good foundation to qualify for other things. When my son took the ACT through the school district, they submitted his IEP on his behalf for all of his accommodation, so it was smooth and simple for us (all students, including homeschoolers, get one free ACT or SAT depending on what the district offers). If he were to take it again, we'd have to submit all of that.

Is his therapy for language work generally or for articulation? Language ties into employability, but there are definitely jobs that don't require as much language. My son's major issues were language-related, but he responded optimally to therapy for it. Prior to that, he would've never been able to articulate to a boss what kind of problem he was having. 

 

[maize]

29 minutes ago, kbutton said:

Yeah, the waiting list can be crazy, and each state handles things differently. If he needs it, it's better to be on it. 

I am glad he has an IEP. That is a good foundation to qualify for other things. When my son took the ACT through the school district, they submitted his IEP on his behalf for all of his accommodation, so it was smooth and simple for us (all students, including homeschoolers, get one free ACT or SAT depending on what the district offers). If he were to take it again, we'd have to submit all of that.

Is his therapy for language work generally or for articulation? Language ties into employability, but there are definitely jobs that don't require as much language. My son's major issues were language-related, but he responded optimally to therapy for it. Prior to that, he would've never been able to articulate to a boss what kind of problem he was having. 

 

Articulation and more general communication.

They're kind of limited in what they can work with him on with regards to language because he also has selective mutism (the evaluation team agreed that it should be a separate diagnosis from the autism) and simply shuts down around certain types of communication. He has good language skills overall, but that doesn't do any good if he freezes. Haven't figured out how to work on that but it would be worth discussing with his speech therapist.

What kind of therapy did your son do?

[kbutton]

16 minutes ago, maize said:

Articulation and more general communication.

They're kind of limited in what they can work with him on with regards to language because he also has selective mutism (the evaluation team agreed that it should be a separate diagnosis from the autism) and simply shuts down around certain types of communication. He has good language skills overall, but that doesn't do any good if he freezes. Haven't figured out how to work on that but it would be worth discussing with his speech therapist.

What kind of therapy did your son do?

He worked a bit on narrative language with an SLP. He used stuff from Mindwing Concepts. His issues were kind of narrow and centered on the Critical Thinking Triangle part of their language program. He had to back all the way up and use the autism book for that part of it called Making Connections. Once that was in place, he worked with a tutor who really understood the reason that these products worked for him, and she referenced them while making up a lot of stuff on the fly or finding resources that were parallel. She poured over this and then extended those concepts to his level: https://mindwingconcepts.com/products/deepening-discourse-and-thought-3?_pos=4&_sid=0e0b62484&_ss=r 

He is kind of unusual in that his language issues were narrow but deep, and when he got therapy for them, he didn't have to relearn a bunch of stuff, he just needed some bake time and easier assignments to help him integrate it with what he already knew. I know that sometimes when a skill puts the brakes on an area, nothing sticks until it's gone. With my son, some things were a non-starter (writing a paragraph, making a generalization), but he could write really beautiful compound-complex sentences, lol! He could NOT use transitions/subordination between ideas or sentences, but once the underlying problem was fixed, the transitions came on their own. Some kids would need to be taught things like that explicitly once the underlying problem was fixed. I say that because everyone's response to therapy is different and how their problems manifest is different--people truly thought my son was just stubborn, etc. A BCBA finally noticed a language problem, but even when we got testing, she still put him in situations over his head. It was not easy finding a just right spot to tackle.

Before doing this stuff, he could not tell us about an event and articulate what the problem was that came up during that event. He could list out some stuff orally by making statements, and we could tell that he was upset or stressed. We had to totally piece together everything by reading between the lines and then talk it out through trial and error. We had to put Facts A, B, and C together and see what didn't add up. He would know what the problem was but was completely unable to state it. His problem-solving and critical thinking skills were not hooked up to language at all. If we didn't figure it out, he'd just still be stuck. Sometimes, he didn't know what the problem was, but something would happen later that was like it, and then he could articulate it--sometimes articulating this would happen YEARS after the event. It's like the words would get lost in a time machine.

He also did a bit of work on telling what's happening in pictures. That was a difficulty for him big time.

Now he's able to spit it all out, generally in great detail and connect it logically. It doesn't mean he doesn't sometimes get flustered, but not more so than someone else his age, just maybe in a different way or for a different reason. He approached us all the time with problems and how he intends to solve them. It's so different!

He did go mute a few times when he was old enough to realize how frustrated he was. It was going mute or go into a rage because he couldn't articulate things, and people had no real reason to think he was being anything other than stubborn.

It was very camoflaged.

His scores on the WISC verbal section were fine this whole time (like 99th percentile). Language testing that was multiple choice vs. open-ended would not turn up much of anything. TOPS testing (adolescent version) and narrative language testing pinpointed a problem because both were open-ended.

 

[kbutton]

33 minutes ago, maize said:

He has good language skills overall, but that doesn't do any good if he freezes. Haven't figured out how to work on that but it would be worth discussing with his speech therapist.

If it's not anxiety, I bet there is something still stuck in there to be teased out. 

Is it private SLP or through the school? While our SLP did get the train on the track, it was the insightful tutor who technically had no specific qualifications other than a knack for this that really got everything humming along. 

[maize]

School SLP right now, though we have had a private SLP in the past.

His mutism issue is atypical--he shuts down when expected to talk about himself--not just his feelings or perceptions, but anything he was involved in. Even something like "what was the youth activity tonight?" It makes working with therapists really hard. I do think it is at core an anxiety issue.

[kbutton]

7 minutes ago, maize said:

School SLP right now, though we have had a private SLP in the past.

His mutism issue is atypical--he shuts down when expected to talk about himself--not just his feelings or perceptions, but anything he was involved in. Even something like "what was the youth activity tonight?" It makes working with therapists really hard. I do think it is at core an anxiety issue.

How does he answer other open-ended questions that are not things he has a ready answer to (ready answer, such as something he's read)? My son struggled with this kind of thing too, but he didn't go mute. He went mute more in high stress/conflict/problem-solving situations, whereas now, he's likely to be one of the problem-solvers.

Edited March 4, 2022 by kbutton

[maize]

Most often, he doesn't answer.

He CAN answer--oddly, he is more likely to answer in a group setting. It seems to be something especially about feeling on-the-spot in one-to-one communication that makes him freeze.

[maize]

It's been a rough year for him; he has OCD that got dramatically more severe about a year ago and ever since then he has been more withdrawn, more mute, and generally less socially (or otherwise) engaged.

[Lawyer&Mom]

Have you tried the talking in the car trick with him?  With Autism it can be easier to communicate when you aren’t expected to make any eye contact at all.  Having conversations in the drivers and passengers seats can make things easier for me.  Or staring up at the night sky works too.  Might take some of the one on one pressure off of him.  

[Storygirl]

One of the things that has been the greatest help so far, in our case, is getting connected with our state's vocational rehabilitation. I know that you said that there is a long wait list for a waiver, but in our state, that is something different.

DS has received job training classes, a group summer job placement with a job coach, and then help writing a resume and applying for a job. Then some job coaching during his first months of working. All through the state vocational rehabilitation teen program, and all at no charge. We can get other services from there, too, such as help learning to drive.

The waiver thing is through the county and works separately. I'm not as well versed with that, because though DS gets county funding, he is not on a waiver. You might check with your county board of developmental disabilities to see what other helps are offered, other than being on a waiver. DS can use his funding for things like speech therapy, counseling, transportation, etc. Honestly, it's not a huge amount of money; it's the connection to services that is most important to us, because we want DS to be able to have people other than us on his team to figure out how to transition into adult life.  Our county board of developmental disabilities is supposedly one of the more helpful ones in our state, yet it has been tricky for me to figure out how to work with them, so these things are not always easy. But it's worth investigating.

Therefore, I would put on your list to contact the county and state disability offices. Our school IEP coordinator actually helped us with this, which was good, because I didn't have a clue that these resources existed.

DS17 was diagnosed with ASD at age 15, after accumulating a series of other diagnoses along the way (and after we'd been told multiple times that it was not ASD). So I can appreciate how important it is for you to finally get the diagnosis. It can open some doors to getting help, but figuring out where those doors are can still be tricky.

Oh, you may see if there is a medical office anywhere nearby that specializes in working with people with developmental disabilities. I assume that he has a difficult time talking to medical professionals, and hooking him up with doctors who have the skills to deal with that may be important. An office like this just opened in our area, but it may be hard to find one.

[PeterPan]

On 3/3/2022 at 8:10 PM, maize said:

It's been a rough year for him; he has OCD that got dramatically more severe about a year ago and ever since then he has been more withdrawn, more mute, and generally less socially (or otherwise) engaged.

Lots of people's issues got worse with covid. The anxiety around covid amped things and then if you got covid (or the vax) and had inflammation from that (some people, not all), that could make it worse too.

Everybody has an opinion, literally everybody. Somebody will tell you ABA, somebody will say Social Thinking, somebody will say late bloomer and relax and all that jazz. My two cents is it's really hard to bust through anxiety (chemical, physical origins) so the chemistry has to be a high priority. Until that is in place, it's really hard to *receive* good instruction and meaningfully apply it. And if you look at almost everyone who has made progress here, that's where it started with getting the chemistry under control.

Next is self awareness=interoception. If you don't have that, then everything else is sort of top down and foisted on you. With self awareness you can pipe up about your own probems, recognize what others are feeling, make predictions, and basically begin to do the Social Thinking stuff they too hard to teach from rote. It will come most naturally if you work on interoception. Bonus is, it makes advocating about the mental health and mutism go better.

On the mutism, as someone in a house where things have been pretty quirk (one whose language drops and the other who never had it till therapy haha) I say hand him tech and validate it. Communication is communication and you don't care how it happens. If he's not *intelligible* that's a different issue. But by all means hand him tech immediately and get him a method he really LIKES and feels like he'll actually USE. People whose language drop will often do a BLEND. So they might talk, get tired, switch to tech. That can be in the middle of a conversation! It's valid and it's fine. 

Everyone else already posted about the vocational stuff, connecting with your county, etc. As far as adulthood, look into "facilitated decision making." It might not (yet) be a legally codified thing in your state but there are things you can line up to do this. It takes working with a lawyer, getting the paperwork drawn up, and it can can be protective. I'm being told to get the plans made so that as soon as he's 18, boom we have the paperwork signed.  It's protective without taking away his independence. 

What does HE want from his diagnosis or what matters to him right now? Social is so important. It's not necessarily practical for most people, but I've been cruising a lot with my ds. He seems to be growing with this because it gives him lots of intensive social interaction in a non stressful environment. There are lots of spectrum kids when you get on these ships. Maybe find something that can go well with him that gets him out there. Give him the tech to communicate and let him hash it out. (venturing out, taking breaks)