There’s a reason that old Rolling Stones chorus is so famous: because it rings true.
“You can’t always get what you want / But if you try sometimes / You just might find / You get what you need.”
If you’re living in an autism services desert, you may not be able to get exactly what you want. Maybe you’re unable to drive to weekly appointments and parent groups, or maybe your area simply doesn’t offer them at all.
But if you’re willing to make a real effort to seek out supports for your family, you might be surprised at what you find. You may uncover a wealth of information and encouragement right at your fingertips.
That said, what exactly do you do when you have a child with autism and you’re living in a rural area? How do you cope when you’re cut off from vital resources by virtue of your location?
Don’t discount the positive
Though it may be difficult to look beyond the deficits at first, see if you can come up with a list of advantages to life in a veritable services desert. You may find that living where you live presents some unexpected benefits.
For example, do you have family nearby who can offer respite? Do you have a job that allows you to work remotely and enjoy flexible hours? Do you live in a low cost of living area, which allows you to keep expenses down?
As autism sibling Caroline McGraw writes in the AutismAfter16.com feature, Autistic Adults in Rural America Part II:
“For many families living in rural America, the experience of living with autism is markedly different from that of urbanites—for better and for worse. Quality services can be harder to come by, job opportunities can be limited, and residential options outside of the family home can be virtually non-existent. By the same token, the tight-knit quality of rural communities can often be more socially and emotionally supportive.”
Take a full inventory of what is available
Honestly assess the situation, as it might not be as bleak as it initially appears. Once you’ve received an autism diagnosis, start learning all you can about the local services available to you and your family. Ask appropriate personnel at your child’s pediatrician, school, or daycare for resources and referrals.
Talk to your fellow parents whenever you find them, and don’t be afraid to ask questions, either. Many professionals and fellow parents are happy to help others, especially in the initial post-diagnosis period. So ask them which regional services they recommend, and why.
If it feels too frightening or challenging to reach out to strangers on your own behalf, do so on behalf of your child. After all, you are your child’s primary advocate. If you don’t seek out appropriate resources to meet their needs, those needs may well go unmet. So pick up the phone, set the meeting, and get out of your comfort zone for their sake.
One word of warning: recognize that the post-diagnosis period is a vulnerable time for many families. Sadly, there are people who would take advantage of that confusion and vulnerability. Be open to help, but trust your intuition and keep an eye out for suspicious ‘cure’ claims.
Get online and start searching
Next, hop on the Internet, and research the information you received from various local contacts, and supplement it with your own discoveries.
Two helpful places to start are: The Autism Society of America’s online directory and the Autism Speaks state-by-state resource guide. Thanks to them, you can browse listings of service providers, specialists, and support groups in your area.
If you can’t locate a desired in-person service, know that you can almost certainly find a similar program online. You can access everything from parent support groups to autism specialists to video trainings.
You might even be able to see a specialist remotely, as some doctors and hospital programs have embraced telehealth services to help patients in rural areas.
Also, you’ll want to check out these relevant posts from our blog:
- The ultimate list of quality autism resources
- 5 autism resources every parent should have
- A guide to autism support for parents
- FirstPath Autism is a lifeline for parents
Think outside the box
If you can’t find what you’re looking for, consider starting your own grassroots organization or support group for fellow families. Many of the nation’s leading autism non-profit organizations, from The Daniel Jordan Fiddle Foundation to Families for Early Autism Treatment (FEAT), were started by autism parents like you.
Consider starting a free trial of FirstPath Autism
One of the most valuable things you can do for your child is to invest in ABA therapy support. If you’re unable to access local ABA services, FirstPath is an accessible, affordable way to help your child grow and develop key skills.
As our director Romina Kiryakous notes in our introductory video The Treatment, “[FirstPath] will teach you step by step how to progress your child through each domain.”
Plus, in addition to receiving access to our full video library, you’ll be able to call on ABA professionals for live, real-time support.