Autism Spectrum Disorder Resources

[CoherentMoose]

Hello,
My fiancé's son exhibits behavioral patterns of autism spectrum disorder.  He's high functioning, but there are some behaviors we're struggling to deal with.  In particular, increasing hostility towards his mother and sister, along with difficulties handling remote school instruction from his teacher.  He melts down when he doesn't understand instructions.   The ex refuses to authorize any mental health activity.  States he will not allow his children to be "labeled".   We're prepared to go the legal route after the Holidays, however, we also want to get parenting help and/or coaching in dealing with these behaviors.  It's my opinion improving our parenting skills is a higher priority than getting the children into counseling due to the scorched earth xBPDH will unleash on the children once he's served papers to allow mental health counseling. 

Can anyone in here point me to towards a board or site that provides help for parenting high functioning children with autism traits?  A board like this one would be great!  I've learned a TON in here. 

Or, does anyone have any recommended books we can read?

Also, does anyone have any recommendations or references for parenting coaching? 

Any and all help will be appreciated.  Regards, CoMo

[worriedStepmom]

Have you looked at the symptoms of anxiety in young boys too?  My son (age 11) has some traits of ASD but isn't actually on the spectrum.  Instead, he has an anxiety disorder that manifests in similar ways to the behavior you mention - hostility towards his siblings and utter meltdowns, complete with hiding under the bed for hours or violent tantrums.

I don't know enough about ASD to know if the things we've tried will help in those scenarios.  for us, I've had to become super-validation expert and super-soother.  We're working through making sure that S can identify his emotions, and then working on ways to help him deal with each one.   For us, it works best if I sit near him, silently, until he calms down enough to be open to hugs or back scratches.  Then we sit silently cuddling until he's ready to talk.  Then we can usually dig into the problem feelings and how to handle them.  It's exhausting.  We're finally at the point that he understands that he isn't facing all of these challenges alone - he's got me and his dad (my ex) on his team for the daily stuff.  That's helped soothe him a lot.

S has been in therapy for 3 years and on anti-anxiety meds for 18 months.   They've been a huge help.

Since you have to wait for the legal process to play out, can you try -
a) talking to the school counselor for tips?
b) getting a therapist for you or your partner or both and ask for parenting tips and coaching?  Mine has been a lot of help to me in pointing me to resources related to the issues I'm dealing with or to skills she thinks I need to have
c) if you think it might be anxiety-related, maybe a heart-rate monitor (like a Fitbit) that he can wear to see when anxiety is spiking.

[CoherentMoose]

Thank you WSM.  Will look into the fit bit for Christmas.  I will suggest letting him settle down first before speaking to my fiancé.  When I listen to the exchanges, it's obvious he's in "fight or flight" and is not capable of rational thought.  I'm also on-line researching parenting coaching.  Anxiety is certainly a factor, especially when he doesn't do well in school because he will be yelled at when he goes back to his father's.  Also, he's terrified of getting Covid so anything out of the house becomes a small battle.  Lots to think about.  CoMo

[ForeverDad]

Also, he's terrified of getting Covid so anything out of the house becomes a small battle.

My marriage imploded when my son was 3 years old.  Time passed and he's an adult now.  He's taking some university classes and working too.  I don't fret that he might get COVID-19, just that I would be at risk.  Statistically people under 50 that don't have immune compromising chronic illnesses recover with minimal side effects over 99% of the time.  CoMo, does the boy understand that?

It might help to explain how that coronavirus is so nasty, and for whom.  Researchers have determined that it focuses on ACE2 receptors on cells.  Young people have fewer ACE2 receptors than older people.  One session won't be enough to allay his fears.

Or is his terror that he might pass it on to older family members?

[CoherentMoose]

FD;

It might help to explain how that coronavirus is so nasty, and for whom.  Researchers have determined that it focuses on ACE2 receptors on cells.  Young people have fewer ACE2 receptors than older people.  One session won't be enough to allay his fears.

I've shown him the CDC numbers, but he does not seem capable of understand risks, and has been told not to trust us by his father.  We explain we follow all CDC guidelines and would not put him at risk, but again, anything we say is a "lie" and the CDC doesn't know what they are doing.  I'll try again with describing the ACE2 receptors and see if that make any progress. He's interested in science so that approach may have better success.

Or is his terror that he might pass it on to older family members?

He has a "new" step brother his dad told both children they will kill him if they bring Covid into his house.  The step-brother is coming up on a year old now.  Their father is using Covid as a control mechanism.  Convenient that.   That is part of the terror for the son.  Hard to help a 10 year-old understand life risks and trade-offs, especially when his personality is very much black and white thinking too.  So, we're taking a more relaxed approach and let him stay home and we split up, or let him sit in the car when we go out.  He seems to be responding well to giving him more control and us not putting him into situations where his anxiety takes control.  No reason to put him into situations he's not capable of managing at this point.  Thank you for your advice.  Best Regards, CoMo

[worriedStepmom]

He seems to be responding well to giving him more control and us not putting him into situations where his anxiety takes control.  No reason to put him into situations he's not capable of managing at this point. 

This has definitely been key for my son.  I've learned to pick my battles very carefully.  We do a lot of talking about consequences and thinking through the effects of your choices.  I'd rather teach him to make good choices - thus giving him control - than forcing him to always follow my choices.

Mine was also very black-and-white until recently.  As he's learned to soothe the anxiety (and as the meds helped regulate his brain chemistry), he's been able to accept nuance.  But when your anxiety is SO HIGH, there's no room for grey.  Something is either terrifying or manageable, with no in-between.

Your partner might also talk to the pediatrician.  They may be able to offer some guidance.  And some will prescribe medication so that he won't need to see a mental health provider over dad's objections.

[Turkish]

Our son was diagnosed as ASD1 when he was 7. We went through the ABA therapy for 8 months.  I know that ABA is seen as controversial in some ASD circles. One of the ABA therapists noted that I used some ABA techniques unknowingly. Personally, I thought it a waste of time and money though I learned some things... that I could have learned on the internet. 

[CoherentMoose]

Turkish,
Thank you for your thoughts. 

Personally, I thought it a waste of time and money though I learned some things... that I could have learned on the internet.

We've decided the best path forward is to search for parenting advice.  We're now looking for coaching perhaps meeting once per week with a coach who can help us deal with various scenarios that come up.  Do you have any suggestions and/or tips on interwebz search keywords or sites to peruse?  Thanks.  CoMo

[Turkish]

Turkish,
Thank you for your thoughts. 
We've decided the best path forward is to search for parenting advice.  We're now looking for coaching perhaps meeting once per week with a coach who can help us deal with various scenarios that come up.  Do you have any suggestions and/or tips on interwebz search keywords or sites to peruse?  Thanks.  CoMo

I know that ABA is controversial in some autism circles, but these might help.

https://www.google.com/search?client=tablet-android-samsung&sxsrf=ALeKk035BND1dpMnZLCIJ9YUM-mUQKumzw%3A1606890415003&ei=rjPHX5TnPOOn5wLku6-gBQ&q=aba+techniques+for+parents&oq=aba+tech&gs_lcp=ChNtb2JpbGUtZ3dzLXdpei1zZXJwEAEYBzIFCAAQkQIyAggAMgIIADICCAAyAggAMgIIADICCAAyAggAOgQIABBHOgcIIxDqAhAnOgcILhDqAhAnOgcIIxDJAxAnOgQIIxAnOgQIABBDOgYIABAKEEM6CAgAELEDEIMBOgcIABCxAxBDOgUIABCxAzoFCC4QsQM6CwguELEDEMkDEJMCOgIILjoFCAAQyQM6BAguEAo6CggAELEDEMkDEAo6BAgAEAo6CQgAEMkDEBYQHjoGCAAQFhAeOggIABAWEAoQHjoICCEQFhAdEB46BQghEKsCOgcIABDJAxBDOgUIABCSAzoICAAQsQMQkQJQyj9Yx9cBYP_zAWgWcAF4BIABmgWIAeI9kgEMMC4yNS45LjEuMS4xmAEAoAEBsAEPyAEIwAEB&sclient=mobile-gws-wiz-serp

It depends upon what function level the child is as well. It's verboten to suggest that parents cause autism, but they can certainly exacerbate behaviors. My mother's solution to my then 6 year old melting down would have been to smack the crap out of him. She hinted as such, and I know how she raised me (she was also BPD).

My son used to be very hard on himself, and I caught him smacking his head over something he didn't do right. I gently grabbed his wrist and said it was ok, and it's ok to make mistakes, etc. When he was younger, he literally cried over spilt milk. I called him, and showed him how to clean it up and get more (I think he was 4). Things have to be "just so."

He hasn't had an epic, screaming meltdown in two years, but for those I finally figured out to let him cry and scream in his room, even with the "I HATE DADDY!" He didn't want to be touched, comforted, talked to (even using validation). He'd return to baseline in half an hour and go on with the day like nothing happened.

1 to 2 years until puberty hormones! We'll see how it goes.

[CoherentMoose]

Copy.  Thank you for your comments. 

He is very high functioning so I'm hopeful if we can show him how to manage his emotions he'll be fine.  I have noticed that once he's through whatever crisis he enters, he behaves like it didn't happen.  Last night he tackled a school project he melted down on earlier in the week and completed it on his own.  Very nice to observe. 

I've also noticed backing off and letting things run their course works much better than engaging, although it means he fails to meet some school requirements.  His teacher has realized things are not "normal" and is attempting to accommodate by giving him more time or second tries at timed events. 

I started reading the book "Differently Wired" by Deborah Reber and it's helping me realize I have to change my thinking on my role in his life.  He did not asked to be put into this situation. 

I've backed off considerably (actually almost completely) and now mostly observe how my fiancé attempts to parent him and help him through his emotional struggles.  Quite humbling frankly as I'm used to jumping in and helping to solve problems.  I've successfully raised four children and thought I would be a natural at the "step parent" role.  heh. 

I will be attempting a completely different approach by just starting and working on small electronic or programming projects when he is in the house and see if he shows any interest in participating.    CoMo.   

[livednlearned]

The best resource I found is www.aspergerexperts.com and the sensory funnel as a way to understand what's going on. ABA and a lot of traditional parenting and teaching tends to focus on executive functions and social skills at the top of the funnel, when many of the root issues are happening at the sensory level at the bottom.

In our house we think of ASD as a spectrum of sensory differences, including the more obvious ones like bright lights, sounds, textures, smells, but also including the sensations experienced with strong emotion.

I also found the UK to be slightly more advanced when it comes to interventions. The pathologic demand avoidance (PDA) stuff (a variant of level 1 ASD or asperger's) helped me develop better parenting interventions, even small things like, "you can do this later when you have a moment..." vs. "vacuum now please"

And explaining in straightforward terms why things need to be done, such as "too much sebum building up on your scalp can apparently lead to something called alopecia. I know the scent of shampoo is hard, and I found there is one that has no scent that I'll leave in your shower if you want to try it sometime." Hygiene is tough with ASD. With teeth, I know say, "Any time you brush is good.

There is this thing they refer to as spoon theory where, say, high-functioning neurotypical people wake up with 10 spoons and only use 3 during the day. Whereas someone with ASD wakes up with 5 and uses 3 just to wake up and bathe. By the end of the day, someone dealing with sensory issues may have no spoons left, so allowing time to get sorted out before jumping into other routines can help.

I think of PDA as a response to shoving my son through intense sensory issues without letting him get sorted, and he developed a contrarian mindset not only to others but to himself. Even when he wants something, that can actually make it impossible for him to do that thing.

Danny Reade at aspergerexperts.com talks about somatic experiencing therapy as one of the things that helped him. I'm not ASD but I did SE in anticipation that it might help my son (we both have a history of trauma) and it was profoundly helpful, sort of helped settle my nervous system after years of being in a bit of a fight/flight/freeze loop.

Traditional parenting has gotten me nowhere, although I do benefit from the persistent nudges from my husband (S19's step dad) to keep moving things forward. We are very deliberate about milestones like getting a bank account, managing money, having a credit card, getting a passport, figuring out ways for him to make appointments, go food shopping, driving a car. S19 is plenty capable but he needs strategies for how to manage the overwhelm that makes everything that much more taxing for him.

We have talked about strategies for employment so he can manage his own spoons better. Like looking for jobs at night when there are fewer people, or doing contract work so he can take breaks, or shift work where he can control his schedule, or seasonal work like doing taxes.

I personally see he is much more capable but he's also 19 and figuring out how to manage himself, and if it takes him until he's late 20s to realize he wants to finish college, I'm ok with that. S19 is exceptionally intelligent and like a lot of people with ASD, he just needs someone who will walk with him and explain strategies for making his experience tolerable so he can navigate bigger challenges. He has a facility for statistics that is pretty impressive and all I do is comment and walk away. Too much praise isn't a good thing so I walk that fine line. It sounds like you might have a way in with your fiance's son with projects, and you have the right approach. My son seems to light up when I'm stuck struggling because he enjoys feeling helpful or useful, like most of us do. So many kids with ASD get the constant message that there is something wrong with them and being useful/helpful is huge.

I try to be a good coach and walk with him. He's in many ways a much better person than so many people and he trusts me because I show curiosity about what it's like for him rather than impose my ideas of normalcy that, when inspected, are usually kind of lame anyway 

[CoherentMoose]

LnL,
Wow!  Thank you so much for your post!  Some great information that I'm already sharing with my partner.  You've described some behaviors I'm observing exactly.  Like the hygiene issue.  Simply "brilliant" description of what I'm observing. 

I showed him how a RV heater DSI igniter works to light the propane stream last night on the heater I'm repairing and he thought that was so cool to see.  I asked him to listen as the house natural gas heater comes on to see if he can tell when it lights.  It was a transition day and typically he's so angry he refuses to look at me, but last night, he was talkative and did not seem as angry as he usually is.  Nice to observe.

I love this site.  So many useful tips and advice to try. 

Thank you again LnL for taking your valuable time to post.  CoMo