Is she fine, or is she masking?

I keep meeting folks who have one kid diagnosed but other kids that aren’t. There is relatively strong evidence that it’s genetic/hereditary (Genetics of Autism Spectrum Disorders – PMC (nih.gov)) – enough that I’m not sure why folks aren’t told to automatically have all siblings evaluated.

I’m 42 and just now starting to figure out who I am and who I want to be, I spent so long masking so deeply that it’s taken over two and a half years to start to realize that I don’t need to do things I “should” to be “normal” or “fit in” – a recent example was telling my best friend that I don’t like eating at restaurants, most of them are sensory nightmares and that I would stay home and happily wait while the others went out. It’s so nice to be able to say no to things without feeling guilty or like I need to explain or give reasons.

ABA is a Tool

If you have been traumatized by ABA, please know I love you and hope you can love you too.

And like most tools, it can be used to build up, or tear down.

ABA has frequently been misused to teach neurodivergent children to mask – squashing their authentic self and thus traumatizing them.

Atomic Habits is basically the layman’s guide to using ABA to build the life they want.

If your child does not LOVE going to ABA or seeing their BT/BI, then something is wrong.

ABA is supposed to be individualized, so if they aren’t customizing, it isn’t being used properly.

We use ABA to support acquiring self-regulation skills, self-advocacy skills, coping tools and communication skills.

We do not use ABA to teach compliance or masking – we don’t ask for eye contact, but we do point out that when someone is facing away or hasn’t gotten our attention, then it’s hard to hear, and if we don’t hear, we can’t reply.

The number one thing they do is catch the kiddo doing well and praising that. Which helped me realize how terrible I was at it. It felt really weird and kinda fake at first, but I’m much more comfortable now and it feels really good.

Input Required

I had a friend ask for ideas, I’m generalizing here for anyone it might help.

Kiddo asks parent for proprioceptive input.

Parent either can’t or can only offer some input.

Kiddo can’t handle the refusal – they already are disregulated and needing input, so they escalate.

My suggestions came from my experience:

1 One, it’s ok to have boundaries, and the less someone respects your boundaries, the bigger the boundaries have to be.

I’ve described it like the following distance when driving – if someone in front of you or behind you is tailgaiting, you need a larger following distance. That way if the person in front crashes from tailgaiting you have time to brake. If the person behind is too close then you also need time to brake slowly so they don’t hit you like they would if you had to stop suddenly.

What this looks like is stopping your kiddo farther away and asking them to slow down and ask first. If they are too disregulated to respect the boundaries, then you know to take action to protect yourself and help them get regulated. For example my personal bubble with the kiddo is my head and my back, if he wants to go behind me he has to ask, and if he wants to touch my face he has to ask, and if he wants to give me a hug, he doesn’t have to ask unless he’s trying to come up behind me.

2 Two, if they are asking for input you can’t give, try to give them or help them get the input they need. I’ll offer “squeezies” – a big bear hug, “squishies” – squishing the kiddo between me and a counter/wall/etc. or “jumpies” – holding hands and the kiddo jumps while pushing down on my hands, similar to holding a gym bar or pushing down on a counter or table and jumping.

In this case kiddo wanted what we call “shoulder bup” – sitting on shoulders. The two alternatives I thought of was doing a piggy back and then leaning against the wall to take some of the weight off or doing the shoulder bup with leaning back so that most of the kiddo’s weight ends up on the back of the seat if available.

If those aren’t options, a headstand or handstand might help or the other types of input mentioned. Another one we like is “Timber!” where they call that and you are a tree that then falls down on them – usually sitting side by side and leaning into them.

Coffee Chat Info Dump!

E.C.’s grandma: Don’t be furious, get curious!
J.K.: Embrace diversity with curiosity!

So you have your autism diagnosis:

Apply for IHSS (In Home Support Services)
– use a disability advocate, their knowledge is worth it!
– recommendations: Galt Advocacy
– if you qualify for Medi-Cal then apply for IHSS asap because it gets back dated to date of application, then apply to the RC (Regional Center)
– if you don’t qualify, then first apply to the RC
– apply for Medi-Cal through the RC (medic-alert bracelet/keychain/etc. monitoring service counts as receiving service) then you can apply for the Medi-Cal income eligibility waiver which will allow you to apply for IHSS.

  • For IHSS You must physically reside in the United States. 
  • You must also be a California resident.
  • You must have a Medi-Cal eligibility determination.

  • You can talk most advocates for free to see if they think you will qualify for IHSS. If your child is an elopement risk or requires constant supervision, then it is worth seeing if you can receive IHSS funds for protective supervision. IHSS funds are not taxable if the service provider is a parent living with the child.

Regional Centers (RC)
GGRC, RCEB

O-3 years early intervention is through the RC

3-6 years get an evaluation through your local school system even if you don’t plan to attend public school
– if you don’t have a diagnosis through the RC, it is worthwhile to pay out of pocket for an evaluation, otherwise the school system is likely to avoid the ASD label since that makes your child eligible for more services

16-18 years begin transition to adulthood support through the RC

CA education system info: ED100.org

If you might use public school, apply for an evaluation for an IEP (much easier to choose not to accept it than to have to try to get it later)
If you plan to use public school get an educational advocate (recommendations: Galt Advocacy)
Good IEP blog by an educational advocate in Pennsylvania: A day in our shoes

Needed for RC to provide services after early intervention ends (around 3 or 4 years)
PWN: Prior Written Notice
Insurance needs to also give a letter of benefits to show lack of coverage