3 reasons to stop worrying about the futureJan 15, 2019
If you're like most parents of autistic children, you've spent a lot of sleepless nights worrying about your child's future. I know I have.
There's the obvious worry: what will happen to them when you're gone?
And then there are the myriad other worries. Will my nonverbal child ever communicate? Will they ever learn how to drive? Will they ever have a job? What happens when they age out of the educational system?
These are all legit concerns. However, you are probably worrying far more than you should. Here are three reasons why.
There will be more services in the future.
Ask any parent of an autistic adult - these days, there are sooooo many more services for autistic children and their families than 20 years ago. Why is that? Because these families blazed the trail for everyone else, raising awareness of the need. I know it may seem like our country is becoming less empathetic, but if you don't allow yourself to get caught up in the political drama du jour, and look at the historical trajectory, you will realize the opposite is true. Some day, when your child is grown, you'll look at all the services available to kids and think, "man, I wish we had that when they were young."
The same will be true for services for autistic teens and adults. Your child will have far more support than is available now. That's the great thing about enterprising humans: where there is demand, supply appears.
Instead of worrying, take action. Take a look at families with young adults with autism, and your own child's needs, and ask yourself, what does the right support for adults with autism look like? What kinds of services will allow my child to live as independently as possible and reach his or her potential as a contributing member of society? Then, help in a way that showcases your talents. Maybe you're a writer and can blog about what is needed. Perhaps you're able to run for local office or volunteer on an advisory committee. Or, you could join an autism advocacy organization - there are many more to choose from than there were 20 years ago - and work with them to develop initiatives and legislation that will make it happen.
Technology will make it easier.
Last year I took Tosh to Disneyland. While we were waiting in line for the Mater ride, I noticed a man staring at Tosh. My "ignore him" instinct immediately kicked in, but after a few minutes he got my attention and politely asked if Tosh had autism. It turned out he spends his spare time volunteering to coach kids in a special needs soccer league. He lives in Northern California and works in the tech industry. Here's the exciting part: he told me he is working with some colleagues at Stanford University to develop better AAC devices. "Think an Apple watch, only slightly bigger," he said. The device would include a new, more efficient way to communicate wants, needs, thoughts and basic conversation. And, it would use biofeedback to communicate medical needs, illnesses and even emotions.
Just think how much the iPad has transformed nonverbal communication, and it hasn't even been around for 10 years! What will the next 10 years bring? It boggles the mind. And we're just talking about communication. Technology will also bring self-driving vehicles and make it even easier for disabled people to work from home or build their own businesses.
Technology brings me to my third reason you shouldn't worry so much.
Technology has opened up new medical possibilities
When I attended the TACA conference last October, it was so encouraging to attend lectures presented by researchers and doctors who shared all of the new things the medical community has learned about autism in just the last few years. Sadly, much of this research hasn't yet filtered down to your average pediatrician, but thanks to technology, they aren't your only option.
Tosh only began his biomed testing and treatments last month and already I'm seeing a huge difference in his behavior and ability to learn. Yesterday, for example, he showed me he knows how to count by twos, something I didn't even know was on his radar. At speech therapy, he completed two huge goals, properly using action verbs on his AAC and demonstrating his knowledge of more/most. He also tried new vocalizations without aggressing against his therapist. In fact, he didn't aggress once the entire time! That's never happened before. His ABA data also supports his recovery, with a drastic reduction in aggression since we began new supplements. And this is just the beginning!
Tosh's biomed doctor is located in Connecticut. We are in California. Technology has made this arrangement possible. It's not just medical research that is improving, the ability to share test results, order supplements online and meet using video conferencing is improving medical care. We also have an open minded pediatrician who is willing to work with our biomed doctor to discover the biological reasons why Tosh struggles with aggression, speech and learning and prescribe supplements to help him. Internet searches can help you find a pediatrician like him, thanks to medical office websites, online reviews and parenting groups on social media where you can ask for referrals.
Will there be a cure? Medicine is working on genetic therapies that could reverse the genetic mutations that cause autism, but I think we need to pause and consider the ethical issues. I believe that autism is neurodiversity that deserves celebration and I wouldn't want Tosh to lose his autistic qualities and talents that make him unique.
However, I wish he could speak instead of using a communication device, which is inefficient and frustrating. I wish he could quiet and focus his mind and body when he needs to. I wish he could eat a buttery croissant from time to time without damaging his intestines and poisoning his brain. In this sense, autism is a medical condition that needs treatment.
There are doctors who have found ways to relieve symptoms without invasive DNA alterations and even more are researching new solutions. And the internet is there to help you find and access them.
So sleep well tonight! Your child's future is very bright.
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