Help me decide what to do next

[sarahmama]

So DS7 is different than his siblings... some of his challenges are 

-extreme rigidity particularly about time(if someone says they are coming at 6:00 heaven help them if they show up at 6:01)

-prone to extreme meltdowns (someone steps on his toe he can cry for 30 minutes or more)

-lack of ability to understand language flexibility(his spelling curriculum asked him to find the word related to call on his list, it was called, but they could not be related because call has 4 letters and called has 6)

-he cannot do any schoolwork without someone sitting directly beside him prompting him to take the next step

-he fights that there are steps to do things like math, he believes he should just be able to do addition however he wants and get the correct answer and is prone to meltdown if he is told that his system did not get the correct answer

We have been doing OT for several months and while there are areas where we are seeing improvement, we are still dealing with daily meltdowns and constant battles, over lots of little things. We are on a waiting list for an evaluation with the psychologist who is good with homeschoolers in my area, but she won't be able to see him until fall. Would you pursue an SLP eval? Something else?

[PeterPan]

Do you have the option to widen your net to find a psych farther away? I'm hearing long delays on evals now too, but it could be worth a try. Someone known for being good with autism evals, someone in a big city. If this psych doesn't specialize in autism and isn't going to do the ADOS, might be good to look for another psych anyway. As a homeschooler, you have limited numbers of people who have enough time with him to fill out the forms like the GARS, ADI-R, etc. reliably. Sometimes they'll just have the parents do it, but it's really helpful to have the ADOS because it can be done completely by the evaluator to elicit the behaviors for themselves. 

What are you thinking is the explanation for these challenges?

As far as something that will help quickly, it will sound trite, but work to decrease stress. State inquiries rather than asking questions. Give more breaks. Learn about the Zones of Regulation and his "yellow zone" signs so you're catching things before he's red and melting down. If something is not working or has set him off in the past, maybe give it a break for a while to give yourself time to figure out why and in the meantime focus on what WORKS and is positive. Try to get his day POSITIVE. So you could drop spelling and insert games (or whatever his preferred activity is) between school tasks. Make data on how long he can work and when the meltdowns are occurring and see if you can head them off AHEAD, with pre-emptive games, pre-emptive breaks. It's OK to drop stress levels.

https://www.kelly-mahler.com/what-is-interoception/ 

Is your OT working on interoception? He sounds like he has plenty of cognitive to do this and unfortunately very few OTs are trained on it. Read the article and you can either buy the curriculum to do it yourself (with your whole clan! yes!!!) or have the OT do it. 

In our house, rigidity was from the anxiety. Sure it was autism (I assume you're there in your mind, sorry), but it was the anxiety component of it. That's why reducing stress helps. Anxiety can be that cognitive need for structure, predictability, etc., but it can also be chemistry. I'm not saying go put your 7 yo on meds but if the behaviors aren't improving with cognitive based methods (Interoception, Zones of Regulation, etc., you SHOULD BE GETTING THESE), then you may need chemistry help. For my ds, I ran genetics and found some issues with his vitamin D receptor gene, TPH2 which makes 5HTP which turns into serotonin and melatonin. So for my ds, there were treatable issues with chemistry. Meds for ADHD or anxiety can be on the table too. 

Have you talked with your ped? What are they saying to do? Typically they have an ASD screener they could have you fill out and can give you a referral. You're getting psych and OT I forgot. Foo. They could refer you to a psychiatrist and they might be able to get you a referral to a behavioral clinic to get you in sooner. I'm not saying that sounds pretty, but that's another way. When you say evals for fall, you're looking at getting more help based on that a year from now. So if you go to your doc and say his anxiety is too high, I need another referral, what about a pdoc or a behavioral clinic to get us some access to therapies and meds sooner, he's gonna make something happen. But that doesn't happen unless you ask. The fact that you push back is what is saying it's significant enough that you really want help and need it NOW, not a year from now. If that's what you need, that's how you get it.

You do not have to have a homeschool friendly psych. What you need is someone who sees a lot of autism. A big city, an autism school, a clinic in a big city seeing a lot of autism. Widen your net to see if you can possibly possibly get evals sooner.  

And in the meantime, see about that Interoception work and what you can do to lower stress. Let me see if I can find you links. It sounds so trite, I know, but I'm just saying that's what worked for us. My ds would have a meltdown if we used a different road for pity's sake. He doesn't do that now, so it can improve. We had to lower stress. 

[PeterPan]

13 hours ago, sarahmama said:

Would you pursue an SLP eval? Something else?

Although I'm all in favor of SLP evals and he *probably* has some things that will show up, right now what you're describing is stress and anxiety responses due to underlying things the psych will diagnose. If you could get a *behaviorist* who is experienced with homeschoolers, right now they would be GOLD for you.

[PeterPan]

13 hours ago, sarahmama said:

So DS7 is different than his siblings... some of his challenges are 

I'll just ask, since I don't know your situation, what are your resources (people or $$) to bring in help to manage the load?

Around the time my ds began having in-home workers (thanks to the behaviorist who specialized in homeschoolers, GOLD, a God-send), it was just me and him as dd was gone. You wouldn't think with just me and him that we'd have needed help. The stress flows over to everyone and it's understandable that you, by yourself, feel maxed out doing all this. 

So maybe talk context and resources and we can help you think too. Do you have a doting grandma or aunt who could come in? Can you rotate his breaks among siblings? 

I can tell you that when my ds' behavior was at that level, we literally were doing work/break/work/break or even work/break/break/work/break/break to get that stress down. That's your number one tip. Find out what motivates him, what he enjoys, and then do those things for breaks. We did simple things like tossing beanie babies or even cotton balls. My ds would be too *rough* so the cotton balls gave him motion and social interaction while toning down the intensity. My ds is socially motivated, so anything done *together* is a break for him (uno, walks, catch, etc.). That will be specific to your dc.

[kbutton]

Those are a lot of red flags for autism but also for perfectionistic tendencies.

I am glad you are on a list for evals, and I agree with PeterPan. If you can swing it, a good behaviorist could really help, even if it turns out later that it's not autism.