Artist & Writer, San Francisco Bay Area

Before the Diagnosis

The Almost Everything List of what we did to help our boy out before getting the diagnosis.

Our son has autism.

He’s nine years old, high-functioning, super bright, clever, funny, compassionate and dynamic, but the ASD diagnosis is what connects the dots about what hasn’t been working for all these years. My son deserves to be heard, understood, trusted, and accepted for who he is. He deserves access to being all he is meant to be. Without accommodations, I’m pretty sure the frustrations of life would have overwhelmed him as a young person and us as a family unit. Here’s to beginning a new journey. 

Some of what we’ve done since our son was two years old, to get to an autism diagnosis at this late date.

  • Public resource based evaluations from the East Bay Regional Center (community services for special needs children) at ages 2 and again at age 3: declined. We were evaluated twice but didn’t qualify for services.
  • Private-pay occupational therapy evaluation, age 2, based on major sensory issues and behaviors that seemed different to me: results inconclusive. 
  • Insurance-based speech therapy, age 3, because preschool teacher couldn’t understand him: approved.
  • Insurance-based ophthalmology evaluation, age 3, preliminary eye patching therapy + corrective glasses: approved.
  • Insurance-based behavioral & emotional support at age 4, after multiple frustrations at home: declined. Parenting classes recommended. (Thanks?)
  • Support from other parents that have gone down roads like this: constant. Referrals to books & therapists, shared frustrations & solutions. Also: laughter.
  • School-based speech therapy in kindergarten, age 5: approved.
  • Private-pay behavioral therapy, age 6-9, via recommendation from friends, after intense incidents: successful. No approval needed, just our checkbook. WE THANK GOD FOR HER. She taught us things that kept our head above water whenever we hit setbacks.
  • Private-pay vision evaluation 1st attempt, age 7, to see if his behaviors were vision based, 1st attempt: Failed. Not because of lack of need. Son wasn’t able to tolerate the screening, screeners visibly frustrated by him. Which offended me as a mother.
  • Private-pay vision evaluation 2nd attempt, age 8, via recommendation from friends to a vision center that works with special needs kids, to see if his behaviors were vision based: approved but failed. Son would benefit from vision therapy but son was unable to tolerate the 45 minute drive to the therapy.
  • School-based psycho-educational testing after major school issues, age 8:  No deficiency noted. (what!?!? Oh ok they meant he has academic skills. Ok, yes, I see that. But…?) 🙂
  • Insurance-based psychiatric help initiated, age 8: approved. Symptoms noted, cognitive therapy began (not very successful but still), and began meeting with Child Psych. Medicine prescribed.
  • School-based additional supports into school IEP so we could get him to school daily: approved.
  • Insurance-based group classes for ADHD (Spring 2015, age 8) and Anxiety (Fall 2015, age 9): approved. First class successful, second not so much. Lead therapist (was in both group classes) noted his severe setbacks between Spring & Fall.
  • Insurance-based referral to more experienced therapist: approved.
  • School-based home learning program (called “Home & Hospital”) via public school district: approved. Because, again there were major school issues in late November 2015, age 9. Withdrew from public school because of school refusal (major anxiety, couldn’t leave house for school).
  • Insurance-based referral by his child psychiatrist for evaluation re. Autism Spectrum Disorder. Because, major anxiety still not resolving, after medication, group classes, behavioral therapy, cognitive therapy. So: approved. We got referred for the phone interview intake at the Autism Spectrum Disorder Center at Kaiser San Francisco, that phone interview cleared us as a candidate to be sent the intake packet via mail, we turned it around lightning fast (because: desperate), and we scheduled an appt for two weeks later. It was a five and a half hour appointment (child testing & parent interviews.) Not including the child-fighting-the-process time, it was a four and a half hour appointment.

Diagnosis: Autism Spectrum Disorder.

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