Step 4 is predicated on the first three steps. You learn some stuff about autism. You get familiar with someone on the spectrum. You get comfortable with someone on the spectrum. Once you do that, you’ll be in a much better position to be a positive presence in the lives of people living with autism. Of course, your experience of steps two through four might be different depending on the person you’re getting to know. Let me provide a few remarks about what step 4 might look like in the case of Martin and those of us who take care of him.
How to avoid being a negative presence:
* Don’t complain about your typically developing kid in front of us. I know you might feel heavy laden by a schedule filled with soccer practice and ballet lessons. I realize violin camp costs a fortune. And I’m sure the gifted and talented program at your child’s school is inadequate. You should talk about those problems with someone else. My kid has never been able to be on a sports team. I have to pay an insane sum for my kid to go to camp and simply make smores. My kid gets poor grades and fails all standardized tests. Everyday I’m reminded of the parts of our world from which we are shut out. You need not pile on.
* Don’t freak out, gawk, yell, eyeroll, or finger point at Martin or his family members when things are going poorly for him. You’d be surprised how many people feel compelled to offer physical signs of their disapproval of people with neurological conditions.
* Give us a break. We are so exhausted. Don’t ask us to be on the PTA, extra church committees, non-profit boards, or anything else that non-exhausted people can do. Raising a child with significant autism is like an endless cycle of marathons. We are really tired most of the time. And you might be tired, too. But I don’t have time to care about that.
* I could say more, but really, there is one simple rule here: think and think again before you open your mouth.
Being a positive presence:
* Show appreciation for an autistic person’s individual gifts and talents. Voice your enthusiasm for the positive aspects of an autistic person’s personality.
* Model this positivity with your children and other young people.
* Offer your material support. If you can offer respite, you are a godsend. And if not, you can do so many other things. Encourage family members to take care of themselves, help in that care, and offer words of encouragement. Feel free to bring over pizza and buy rounds of margaritas.
* Show the person with autism, their family, and other people that autism does not get in the way of your ability to feel and show love.
* Again, I could say more, but the same holds true. Think and think again about the ways you can be a supportive presence. Be creative. Be open. It’s possible.