4 year old diagnosed as ASD; seeking advice

My child wasn't diagnosed until later and it ended up being a relief to know what inputs were needed. I wish we had understood early so that she could have gotten the inputs earlier. Lots of therapies and medications did not appear to have immediate results, which was discouraging at time, but we learned that we had to be persistent. OT has been great for the sensory needs. Try to do lots of it even if you have to pay out of pocket. See if you can get the speech covered by the school district. If there are sleep issues, be sure to rule out sleep apnea, it is more common in ASD kids. Behavior therapies have not been a good fit for us and social stuff continues to be our greatest challenge.  My daughter is an amazing person and always impresses me with her compassion and creativity.

Best wishes to you.

Hi there, it's wonderful your child was diagnosed young so that you will know how to navigate and to advocate when you encounter less informed institutions and environments for your kid. It will be a lot of advocacy, so I encourage you to also protect your well-being, too. If your intuition is that your child isn't getting what they need, I hope you will feel entitled to push to get their needs met. It isn't easy. 
there are a few great resources I've used as we have learned more about ASD for our child. I highly recommend the podcast Uniquely Human. The most recent episode with a historian who has a lot to say about the problems with ABA was powerful. As a social scientist, myself, the corrective elements of current ASD treatment concerns me, and John Summers is so insightful. 
 

Eliza Fricker's work and podcast, Missing the Mark, are also excellent, even though she's based in the UK. 

I can't find it right now, but I know the Autism Society has a guide on red and yellow flags to be aware of for ABA.

Although you didn't solicit advice per se, I'd encourage you to start with one modality at a time. 15-20 hours for a kiddo is sooooo much. And your family also needs to learn and integrate. Could you start with OT and add things in gradually? 4 is still very young, and ASD doesn't need to be 'fixed,' but supported and attended to needs. Overdoing the interventions may lead to other behavioral responses and even trauma for your kiddo. 

Hi,

I have a 17yr old w/ many special needs, so have been through the whole thing, soup to nuts.

I suggest you hire a professional advocate to advise you. It's been more than worth the money and I wish I'd done it sooner.

I use https://www.php.com/directory/jack-morris-fuerza-consulting-advocacy/

Best,

- Don

My (now five-year-old) son was diagnosed a year and a half ago and it was an overwhelming time with experts telling me what was best for him, what was wrong with him, what I should be worried about for the future. It was a lot to take in and I doubted my instincts as a parent.

Please remember that you’re in charge! You still know your child better than anyone. Trust your gut about what he needs.

It depends on the practitioner, but yes, in-home therapy is common. But if your son is in preschool, I recommend that those 15-20 hours are spent supporting him there. My son gets much more out of school when he has someone with him to facilitate connections with his peers and his teachers.

And it’s worth saying that there is not a consensus about what the best interventions are for ASD and what the goals of those interventions should be. People in the field, parents, and autistic adults have strong opinions (for or against) behavioral therapy (ABA) in particular. You may want to look into the debate so you can decide if it’s right for your family.

A couple of resources to check out:

https://www.embracingautismservices.com

https://tiltparenting.com

https://www.icdl.com/dir

You’re welcome to message me if you’d like more info.

Molly

Hey there,

It’s not an easy road to navigate but it’s really most important to get the right therapies in place and you will see so much improvement in your kiddo. We did the Kaiser route through most of the pandemic and had virtual speech and ABA which definitely helped but I am a proponent of in person services. If you aren’t already, get your kiddo into the school district system because they will be able to provide a lot of services for your son. It may be a part day preschool classroom, speech or OT either on its own or in a group setting within the special preschool classroom. It being summer, their response time won’t be super prompt necessary but once you reach out, they have a legal obligation to begin the evaluation for an IEP within a certain time period, can’t remember how many days exactly. You should also reach out to the Regional Center and while they won’t duplicate services that you get in other places like school district or Kaiser, they offer assistance with other things like respite, reimbursements for therapeutic recreational activities, etc. It takes several months to even get to their intake process so you might as well get into their pipeline now.

there are also Facebook support groups that can be really helpful, some Bay Area wide and some city specific. 
 

feel free to message me with any questions. I am by no means a pro but I have some experience with this process.

Eugenia