A friend once asked me what the hardest part about being the parent of a child with autism was. There are so many hard things I found I couldn’t really pick the hardest.
I mean, there’s that moment where you must realize that all your hopes and dreams for them have to be completely abandoned, adjusted, or compromised. No matter how much they can progress, it’s a matter of understanding that they will always have this diagnosis and it will always impact their life in some way.
Daily challenges and the stigma surrounding autism
There’s also the hell of other people. I have two children on the spectrum. One boy is 8 and the other is 10. The 10-year-old is a more serious case. Still mostly nonverbal and struggling. Doing much better, however, on a new medication that he’s trying. I had them at a playground recently and they were playing just fine. They weren’t acting out or acting up in any way. They were just happy kids. The older one was on the swings and the younger one was playing on some climbing equipment when a little girl was trying to talk to him. He answered when she asked what his name was. He answered when she asked if he liked climbing.
But when the questions got more involved, he stayed quiet. She asked the same question several times and I could tell she was getting frustrated that he wasn’t responding so I gently told her it was nothing personal, but my boy has autism so he might not answer everything. Well, that was all the mom of this girl and her sister had to hear before she blurted it out, “That’s it; come on! We have to go. Let’s go right now!”
I’ve had this happen several times and it’s shocking how some parents act as if autism is contagious. How uncomfortable it makes them.
New Jersey’s high autism rate — and the service gaps
In some ways, I’m lucky that I live in the state that has the highest rate of autism in the country. Most people understand it here better because they’ve seen it more. But I’m unlucky in that for the state which has the most cases per capita we are not the state that has the most services.
Early intervention is so crucial for kids on the spectrum. The earlier they’re diagnosed and start receiving things like occupational therapy, ABA therapy, speech therapy, etc., the better chance they have at a more normal, mainstream life. Wait times for seeing specialists here can be shockingly long. I know because I’ve lived it. I suspected our kids had autism and actually had to take them out of state just to get a more timely diagnosis. That shouldn’t be.
Study ranks states on autism services and early intervention access
A new study from Autism 360 has ranked all 50 states for autism services. They used 10 critical indicators of autism support. These include prevalence estimates, availability of BCBAs and RBTs, access to developmental specialists, presence of sensory-friendly spaces, and cost-of-living factors, among others. These metrics were weighted by importance, with behavior analysts and registered behavior technicians carrying the heaviest influence, given their central role in autism interventions.
In this study, New Jersey ranked 10th among states for being able to receive the most comprehensive autism services. It’s good. But it’s not the greatest. The following states all scored higher for services. Virginia, Colorado, Connecticut, Hawaii, Vermont, New Hampshire, Florida, Rhode Island, and Massachusetts, with Massachusetts coming in best at No. 1.
The worst state for access to services was Mississippi, probably surprising no one.
Advice for parents: advocacy, persistence, and hope
Whatever state you’re in, my advice to you is be bold in getting your child the services they need. Be demanding. Summon your inner Karen. Fight doggedly for your kid. Be relentless. Move if you have to. Part of my recent move was to accommodate my children being in a better school district for special needs within the state.
Ash Bhattacharya, spokesperson for Autism 360, commented on the findings. “Families often tell us that navigating autism services feels like trying to put together a puzzle with pieces missing. Where you live shouldn’t determine the quality of support your child receives, but the reality is that it still does.
“In some states, families can access a developmental pediatrician within weeks. In others, the wait can stretch to a year or more. Early intervention is critical, so these gaps have a real impact on children’s long-term outcomes.”
Bhattacharya added, “What gives us hope is the number of states investing in sensory-friendly spaces, autism-specific schools, and professional training pipelines. These changes don’t just support children with autism; they strengthen communities by making them more inclusive.”