Parent training is easy, actual services hard to come by.

If you are a parent seeking resources for your autistic child, you will discover myriad agencies and organizations in Houston sponsoring speakers throughout the year who provide parent training, ABA workshops and speakers who present various “biomedical interventions” (nutritional supplements) and special diets for treating autism. When it comes to the latter, it is often difficult for parents to separate snake oil from truth, especially when promoted by people with impressive sounding credentials who can invoke the complex logic of DNA methylation and “glutamate pathways in the brain” to make their case.

However, after observed 10 years of autism fads, treatments and presumed cures, based on causes ranging from from yeast overgrowth and leaky guts to opiods in the brain, to residual mercury or other toxins, to occult seizures, they all start to wear thin. Years ago, in California, I became weary of arguing with parents who would seek out DAN! specialists, doctors willing to write bogus prescriptions for experimental drug treatments where there was no science to back it up (Now these same doctors are being sued or having their licenses revoked). It was horrifying to me, the thought of subjecting very young and often nonverbal children to anti-psychotics, anti-fungals or blood chelation. I myself almost succumbed to the berating of the renowned Pediatric Neurologist, Dr. Michael Chez, who wanted to place my 4 year old on an Alzheimer’s drug Namenda to further his own research, most likely funded by a drug company. “Do you want to wait until he’s 5 and not talking?!? Why did you come to me if you didn’t want treatment for your son?”

Although at the close of 2015, I still remain hopeful for a cure for autism, I’ve come to the point in my journey as an autism parent where I’ll believe in a treatment when I see ads on TV telling me to ask my doctor for it. This is one thing my husband was right about, though years ago he could not have convinced me otherwise: I could not cure my son’s autism through Internet research.

Big pharmas are investing a lot in autism right now, though they are still trying to figure out good mouse models, since no one knows what is causing the disease. Without identifying a cause, they cannot identify (or create) a mouse, and without a mouse, they cannot find a cure.

In the meantime, we have “parent training.”

I have three issues with parent training. First, although some are free, many cost money to attend, even though sponsored by a government agency (MRA) or nonprofit whose mission is to provide support and services for families of people affected by autism. This bothers me on a philosophical level. Our local authorities, healthcare providers and disability service agencies should not be charging parents for disability services, especially for informational sessions to help parents care for their children.

Second, there is never any real risk on the part of the presenter. This is particularly true of ABA training. The person standing in front of the room giving you wonderful-sounding advice doesn’t know your child, doesn’t have to deal with your child, and assumes no responsibility or consequences when it does not work out. It all sounds very well and good while they are speaking, but what I really want is for them to come over to my house and get my child to do x, y and z. Let them deal with the meltdowns and tantrums.

Third (and this is sort of like number two), I don’t want parent training at all: I want actual services for my child. Real world services, hands on. So on some level I resent all the “parent training, parent training, parent training” for the autism community, because on some level I think it is a substitute for actual services. It makes disability organizations feel good that they are actually doing something beneficial. It’s a band aid.

All of the focus on parent training doesn’t address the real needs of parents: child care for intellectually disabled children, opportunities for socialization for older kids so they can have a friend other than a parent or teacher, and opportunities for independent recreation and growth like other kids have.

Parent training is easy, actual services are hard to come by. I want hands on, not advice.

It has been about a year since I launched Everything Autism.org. Regrettably, I have not achieved my goals for this year. I have learned that it is harder than I thought it to get other people involved in a local fledgling organization, even if the cause could potentially benefit them or their child in the long run. People come to the site seeking to satisfy their immediate needs for information. This is fine, but I had wanted to accomplish so much more long term.

If you are a parent in Clear Lake or the Bay Area of Houston concerned about things like: where might my adult child live after I am gone, where might he work, how can he make friends or socialize, how can he get around if he cannot drive and there is no bus service, adult day cares and after school programs for people with disabilities, I encourage you to join (at no cost to you) or send me an email. Together we can make our community more habitable for people with intellectual and developmental disabilities.

Wishing you and your family a great New Year in 2016.

Emily Nedell Tuck