My wonderful son is 22 years old. He is a sweet, loving and almost always, happy young man. Active and social, he seems to enjoy life very much. He also is very affected by autism which has left him non-verbal and dealing with an array of sensory issues and environmental sensitivities that he must battle every day.
When you say “autism” you can never really gauge what someone’s reaction will be. Some people think “Rainman.” Others picture the kid in the corner rocking and banging their head. In reality, there are a million different variations of the disorder, ranging from one end of the spectrum to the other. There is a saying, “When you’ve met one person with autism, you’ve met one person with autism.” This makes autism very difficult to understand.
For people caring for those on the autism spectrum, it can be confusing, frustrating, and honestly, exhausting. Challenges can change often and many times without warning. What was fine yesterday is suddenly upsetting today. Foods that were favorites can no longer be tolerated. Something as simple as a new hand soap that smells different can be a trigger to a new, unwelcome behavior. With so much focus on helping your child it’s often difficult to give time and attention to other relationships and activities, much less take time out for yourself.
As more and more families find themselves with loved ones on the autism spectrum, and life seems to move faster and faster, I thought I might share some ideas for family and friends to offer support. These are not in any order of importance and of course, will be applicable in various degrees depending on each family.
- Time is so valuable and always seems in short supply. It seems we never have enough time. There is always something we must be doing. Many times, as we are cleaning up one mess, another is being made. Can you offer to help from time to time with chores around the house? Can you assist by running errands as you do your own?
- No one truly comprehends the expense involved. Having children is expensive period but many children and adults on the autism spectrum have very special requirements. Chemical free homes, natural personal grooming items, organic foods, expensive supplements. They all cost money. Can you pick up an extra item from time to time? It all adds up and the thoughtfulness is appreciated.
- We like to be included. Families on the autism spectrum sometimes feel shut out and alone. It can be awkward for us to go out in public, or sadly, many times we are not invited because people don’t know whether or not our loved one can or will participate. Maybe they fear them causing a scene. It doesn’t always work out for us to join in at very busy restaurant or activity, but sometimes it does. Going out and being included can help build tolerance for these settings. If not, at least we know you thought of us and we were given the opportunity to try.
- We’re exhausted. Many people on the spectrum have sleep issues. Naturally, this means that the parents and caregivers most likely don’t get the rest they need. We have to work, do chores around the house, etc., many times on just a few hours sleep. Can you offer to entertain or simply keep safe the person with autism so the parent or caregiver can take a nap? Sleep is so valuable.
- Gift giving and Holidays. It can be so hard to buy gifts for someone on the autism spectrum. People can be embarrassed to ask what’s appropriate. Don’t be. Please ask. Even the littlest token lets them know you care. You don’t have to spend a lot of money to bring joy to someone. Your time and attention are not only welcome but needed.