• Shannon Hughes

When the Help You Need Seems Out of Reach

I’ve been thinking a lot about how hard it is for people with autism to get help. In a time when there is more awareness about autism than there has ever been, you would that help would be readily available to anyone who wants help, but that isn’t necessarily true. There are a lot of organizations, private and public, who aim to help people with disabilities, but there’s often an opportunity cost to get started with them – not in terms of finances, but effort and energy.

I consider myself very fortunate to have had a full-time job with good benefits, the functionality to arrange and keep regular appointments with a therapist who was then willing to refer me to a neuropsychologist who could diagnose autism using a battery of very expensive tests paid for by my insurance. At the time, I had also been employed with my company long enough to have FMLA in order to do all of those appointments. There are a lot of adults on the spectrum who are not able to work full-time do not have access to group health insurance, and even if they did, they would not be able to manage a full-time job on top of regular therapist appointments, let alone appointments with specialists.

We talk about “executive dysfunction” with autism quite a bit, but we don’t often define it. What it means for me is that my ability to manage my time, make decisions, and prioritize is a precious, limited resource. If I take time to coupon and look for the best value on everything I buy, I might forget to pay my rent. If I sort my laundry into too many categories, I could run out of energy to do laundry. Leaving my apartment some days seems more complicated than advanced algebra. People who know how intelligent I am are baffled by the things I can overlook, forget, or otherwise fail to do.

You would think that having a diagnosis of autism would be some kind of blank check for all kinds of services and assistance, but those services have to be arranged. There are phone calls to make – phone calls to insurance companies, government agencies, doctor’s offices, utility companies, and lawyers. There are forms to fill out, deadlines to meet, documentation to provide, prescriptions to fill, co-pays to cough up. Then there are appointments to attend, which means getting out in public, waiting in lines, interacting with people, exposure to lights, noise, and smells that are overwhelming.

Being a self-advocate is mentally and emotionally taxing. A person on the spectrum has to work very hard to function well enough to have other people help them function better. On top of that unfortunate paradox, there is still the prevalent idea that people who are working to arrange services are just trying to get things for “free” that other “hard-working” or “responsible” people are paying for with their tax dollars. I know that there are a lot of people out there who look at what they have to do to get help with daily living who conclude, very logically, that it just isn’t worth it.

If you are struggling with a mental and/or physical health issues, working to get outside help with them, good for you. If you are just barely keeping your head above water and don’t have the time, money, or resources to access outside help, you aren’t alone. Some of us are at a place in our journey where we can’t see more than a week, a day, or an hour ahead. Either way, the struggle is real.

If you’re past the point where it feels like it’s not only too much to get outside help with daily living, and it’s too much just too live, that’s another story, click here for help.

We talk a lot about advocacy and self-advocacy, about solutions for people in one particular demographic or another (kids, teens, adults, educated, uneducated, high-functioning, low-functioning, etc.), but along the way, I think it’s important to acknowledge for the record that it’s hard, really hard. Congratulate yourself on the things you can do when you can do them and keep up the good fight!

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