ABA for therapy-resisting 10-year-old girl with ASD?

My 10-year-old daughter was just diagnosed with Autism. She has a profile called Pathological Demand Avoidance, which means that her anxiety results in her desire to control things, making her resistant to everyday tasks. One of the ways this has manifested is in becoming avoidant of therapy. She claims this is because therapy uses time that she could spend doing other things, and it's true that she has less time for a variety of things that she enjoys such as drawing, reading, spending time with our animals, gaming, and social media. She has had success with theater, which COVID interfered with, but we are hoping to get her started back up in that.

The therapist that diagnosed her with autism is going to be recommending 10 hours of in-home ABA. She is already doing OT and a a social skills group (she is also receiving psychiatric care and is on medication), which uses 2 afternoons per week and it is hard to imagine adding another 10 hours per week to her schedule. She's already fighting her participation in the other therapies. To add to my confusion, I have found a large community of adults with autism that have a lot of negative things to say about their ABA experience as a child, which I am worried will be my daughter's experience. 

When I look at goals/outcomes of ABA for high functioning people, I see that they are exactly what we feel she needs:  Showing more interest in people around them, communicating more effectively, reducing outbursts, reducing self-harming behaviors, and improving focus for non-preferred activities. For her the disconnect is that she already understands these things in theory, but only sometimes demonstrates them.

Does anyone else have a child that fits this profile? Have you done ABA and what was your outcome? Thank you!

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My son has been doing ABA for some years (he's now 17) and in my experience it has both benefits and downsides. We did it years ago and its main benefit was to provide a 1:1 during an after-school programs and it was good for that. This time, with care and learning to pay attention to my 'gut', it has been a net very-positive. I'll list the up- & downsides and the solutions that worked for us. 

Downsides:

The number of hours they want. We negotiated fewer hours, citing quality-of-life. Since the shutdown we've been doing 1-hour online sessions 3x/week (split between working on a Goal and playing games like hangman) which beats the heck out of a person in our house (or backyard with masks) for 3-4 hours. The other days he attends 2-hour social skills and "Fun Friday" groups which he *really* likes.

The super-behavioralist BF Skinner approach. I've found that the more skilled the therapist, the less they hew strictly to that (and sometimes the best ones cycle out of ABA entirely...). We started out with multiple therapists, under the guise of being flexible with the Agency's scheduling, and were able then to weed out the less-effective. "Effective" should look like your child having fun, and if the chemistry is off, then don't feel inhibited to request a speedy change. There were times I waited too long.

Upsides:

Being able to do it virtually for 1-2 hours since the shutdown. I ain't going back.

Improved social skills and (therefore) much greater confidence. A sense of social connection through the group sessions.

He is SO much less anxious than he used to be, and I credit ABA with some of that. His current therapist is really, really awesome.

+++++

The Agency we're with right now is CSD, through Kaiser. They should meet your child where she is, go slow and make it fun. They do lots of games and share online movie clips, etc. Your child's voice is paramount, her buy-in essential (as you know).  Learning how to express her needs is a pragmatic skill that could be an ABA goal, btw. You can always try it, and stop if it's not working. 

:-)

You have my sympathy for this struggle with your ASD daughter.

Our son (now 32) is ASDm and I can tell you what worked for him. 

We were fortunate to have a shadow-aide for him in 8th grade who was a credentialed special ed teacher in another state, awaiting her CA certification.

This aide made a deal with our son:  stay on task for one hour, and you can have one hour free to do what you want to do, He then negotiated:  Can I save up four hours of free time in a block?  Yes, but what will you do with it?  Go to the library!

Amazingly, it worked.  For the first time he was writing coherent essays in class.  And today he works in a library.

So, my advice to you:

1. Above all, trust your instincts about what will and will not work with your child.

2. Can you get another person to direct the ABA who is not you?

3. Make a deal with your child - one hour doing "work" and one hour free.

That said, autistic author and professor Temple Grandin Ph.D. says that as an adult she is grateful that her parents insisted that she learn good manners, hygiene,  and grooming.

If you are starting to lose your patience, back off. The child will remember the fights for years after the reasons why the fights started have been forgotten.

Be kind and loving.  Appreciate the things that your child loves to do, and support her in being able to do those things.

Wishing you the best!

Oakland Mom

I was trained as an ABA therapist, and did it for a year with younger children. The challenge with it is that it is very adult directed, and the child doesn't have much (if any) ownership in the more classical versions of ABA. My work took place in the context of a language-enriched preschool classroom, and I think by and large the children got more out of the "usual" preschool activities with a one-on-one focus than they did with the ABA. There are other, more modern therapies that allow the children somewhat more autonomy. Doing theater seems like another way of getting at the same issues of responding to others. If you could find a ABA therapist who is willing to meet your daughter where she is at, and do a more play-based curriculum that could be positive. (My sister, who is on the East Coast, and is a Speech and Language Therapist, does play-based, language-intensive therapy with autistic children.)

Can you share the name of the therapist that diagnosed your daughter's autism?   I have an adult relative, undiagnosed, who shares these same traits and would love a referral to a diagnostician.  lYou can respond to me publically or proivately as you wish.  Thank you!

OP here. Thank you so much for your thoughtful responses so far. I have also posed this question to some facebook groups that I have joined and all of the answers are really helping give us direction and different things to consider. I am so grateful to live in an area in which people are willing to share their experience to contribute to the betterment of others.

To Kay S: I'll send this to your privately, but I also thought this might be useful for others to read.

-I highly recommend the book Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age Book by Sarah Hendrickx. She herself, despite a great deal of professional knowledge in the field, was not diagnosed until she was an adult. Reading this was the first time that I really started to see that it was autism that helped me "see" my daughter through the lens of autism. 

-Look into Pathological Demand Avoidance, which is a "profile" of some people on the spectrum and is used in Europe, but not here. A general internet search will get you an overview and there are a number of youtubers that are doing videos about it.

-As far as getting a diagnosis, my daughter was diagnosed by Uvaldo Palomares, who you could find on a web search. We are happy with the assessment, but  honestly don't much about him. We were connected to him through our insurance. I would recommend contacting Lisa Greenberg, who I know is equipped to handle nuanced cases and adults.