November is National Family Caregivers Month. This post is dedicated to all family caregivers, but especially to those with unusual challenges.
Most people think of “caregiving” as something done for disabled people by non-disabled people. But there are caregivers who have disabilities themselves, whether triggered by caregiving stress or predating the care recipient’s health issues.
Hello, my name is Katherine and I have Level 1 (high-functioning) autism. I’m also a … well, not a full-fledged caregiver exactly, but definitely a person who was thrust into unanticipated responsibilities after my mother’s cancer diagnosis. At time of writing, Mom is recovering in an assisted-living community, and I am juggling the roles of gofer, chauffeur, administrative assistant, and treatment-decisions representative, along with the regular tasks of full-time work and everyday life.
I can only imagine what it’s like for someone who has autism and 24/7 caregiver/nursing duties. However, I hope some of the things I have learned can help others facing the caregiving-with-autism challenge.
Nothing’s Certain but Uncertainty
Autism comes in many manifestations, but one near-universal trait is that we HATE interruptions. And disruptions, and change, and unanswered questions. Which, unfortunately, are the definition of a new caregiver journey—and often its duration.
Hopefully, you already have coping strategies for when life comes crashing in on your plans. Strategies such as:
- Hug a comfort object.
- Twirl a fidget toy.
- Pause and take a few deep breaths.
- Count to ten (or a hundred if necessary).
- Step outdoors.
- Excuse yourself to a low-stimulation room.
- Use an app such as Calm or Mindfulness Coach.
And remember: you don’t always have to “do something” immediately, even when you get bad news. Avoid snap decisions whenever possible.
Not a One-Person Job
Every caregiver needs a support network—the autistic caregiver even more so. Dependable friends and relatives are invaluable for:
- Providing backup caregiving when you need a break
- Helping with other chores
- Offering a shoulder to cry on
- Accompanying you for moral support during difficult conversations (especially if you’re nonverbal or have difficulty controlling your emotions)
One advantage of autism is that we have fewer guilt feelings about “imposing” on others. And one disadvantage is that it can be hard to avoid sounding presumptive, demanding, or whiny. Plus, we’re less likely to have a large support network in place already.
If you aren’t sure whom to ask, start with the care recipient’s own friends and acquaintances. My mother has a decades-old social circle, and they’ve been a great help to us.
Other people who could be part of your network:
- Family members in other cities/states. Don’t discount people who can’t physically rush to your side: they can still provide advice, companionship, and task assistance via digital contact.
- Members of your church or other religious center. (I have personally found prayer, and prayer support, invaluable in getting me through the roughest patches.) Or, if you prefer non-religious spirituality, a meditation or yoga group.
- Organized support groups for caregivers in general, or for families affected by the health condition involved.
- Easterseals client services. (See the Easter Seals Greater Houston Caregiving page.)
Know Your Limits
Even with a support network, you may be unqualified for the role of primary caregiver. Be honest with other family members, and with yourself, if you can’t handle the responsibility. There are always other options.
That said, don’t just run away from the situation. Pitch in somehow, whether through cleaning house for the primary caregiver or playing a daily match of Words With Friends with the care recipient.
(Note: Even if you can be the primary caregiver, you still need to know your limits—limits that are probably lower than for most neurotypical people. Make sure you save time for yourself, eat healthy, and get plenty of exercise and sleep.)
Finally, if you’re autistic and not a caregiver right now, remember:
It Could Happen to You
If I could have done one thing differently, it would have been to take fewer things for granted before the journey began. When my mother first showed signs of illness, I didn’t recognize it for what it was, and wasted a lot of energy fuming for things to go back to “normal.” The autistic aversion to change, rearing its ugliest head.
So know your limits, yes; but don’t confuse legitimate limits with “the way things are now, is the way things must always be.” Be willing to learn new skills; don’t put off plans for independent living (if you need help, Easter Seals Greater Houston has classes on relevant topics); and take care of yourself as much as you can.
Especially, take care of your physical health; and include regular relaxation breaks in your routine. It builds resilience—the number one skill every caregiver needs.