Autism can be a tricky disability because it isn’t easily understood. It isn’t always obvious, like a physical disability may be, it presents differently in each person affected and the symptoms and behaviors can change from day to day. It’s no wonder autism is usually represented with a puzzle piece.
The intricacies of this disability can weigh on a family dealing with them day in and day out. You don’t need to be a behavior expert or psychiatrist to support a family with an autistic member. Here are some ways you can support an autism family, even if you have no knowledge of autism. Honestly, these are just great ways to support a young family, disability or not.
- Ask questions. Not only will this show that you are interested in learning more, but it can also serve to educate you as well. It may seem uncomfortable to directly ask questions about someone’s disability, but as a parent of an autistic child, I welcome sincere questions asked with the intent to gain more knowledge about my daughter. The more you know about her and how autism functions in our family, the more comfortable my husband and I are in your company. It shows that you are truly invested in our success. We often feel on pins and needles in environments outside of our home because there is so much to manage and we often feel judged by people who don’t understand why we don’t sit down and chat or are constantly monitoring our daughter. It’s so much easier to be around people who understand why we are doing what we are doing and and even better if they’re able to step in and do it for us. Acceptance is one of the biggest challenges we face and knowledge is the only way to combat it. But the trick is to ask specific questions, for example:
- What does autism look like for your child?
- What are some skills you are currently working on?
- How can I reinforce those skills?
- What are some things that upset or overstimulate your child?
- What do you do to calm your child?
- Pitch in. A good portion of my week is dedicated to picking up and dropping off my daughter at school and participating in her in home behavior therapy. But it doesn’t end there. I am still managing her behaviors and doing the interventions outside of scheduled therapy, on top of caring for my son and the usual day to day responsibilities. Basically, our days are mostly dictated by autism related need. It’s pretty much constant chaos over here. You may not feel comfortable babysitting, and that’s okay. There are many other ways you can pitch in to lessen the demands on the family. Take the dog for a walk, run an errand, entertain a sibling during a therapy session. The needs will vary depending on the family, but I can almost guarantee, there is always something to be done that doesn’t have to involve something autism related.
- Offer to help before being asked. If you genuinely want to help, do it! A generic offer like, “Let me know if you need anything!” is well intentioned, but not helpful. The best offers of help are specific like “I’m bringing you a coffee tomorrow morning. Send me your order and I’ll see you at 8!”, or “I can babysit this afternoon. Why don’t you sneak out for an hour,” or “I’m headed to the grocery store right now. Can I pick anything up for you?” It’s so much easier to have an offer made than to remember to text someone for help. When you are in the middle of your day putting out fire after fire, you really don’t stop to think (or get a chance to even execute if you did think of it) of stopping to ask for help or arranging a babysitter. People going out of their way, on their own accord, to make specific offers to help is hands down the way my husband and I feel the most supported. We go nonstop from the moment we wake up and while we’d love the help and know we need it, it’s almost impossible to sit down and schedule it.
- Challenge the stereotypes you believe. A common saying in the autism community is “If you’ve met one person with autism, you’ve met one person with autism.” Obviously, there are common behaviors across the board, but how those behaviors are expressed and displayed are so different in each individual. Each individual’s ability to cope with these behaviors is also a huge factor. For example, we often hear that our daughter must be really smart or a savant, like Rain Man. In actuality, it’s about 10% of the autism population and even if she falls into that category, she’s only 3. We encounter even more stereotypes because our daughter is on the high functioning end of the spectrum and doesn’t display many of the hallmark behaviors of autism (She’s very social, she is verbal, and she is very affectionate). Autism is a spectrum, which I personally think is one of the biggest challenges of understanding it. How can a child who is nonverbal have the same disability as my child? It is very confusing, but the more I learn, the more I understand and that has been the biggest factor in being able to relate to my daughter and the greater autism community.
- Be flexible. The majority of our day is dictated by consistency and schedule because the predictability is calming to our daughter. She is able to cope better when she has the control of knowing what is going to happen next. She is also better at coping when she is rested, so bed time is pretty non negotiable. It’s getting easier to make exceptions as her coping skills and age increase, but right now, we’re as flexible as we can be. Throw in school and therapy and our schedule is pretty packed. It takes a little more planning to get together and the time may be slightly inconvenient to you, but if you can be more flexible than us, please do. We don’t want our life to be dictated by a schedule, but thats’s really beyond our control.
- Give us the benefit of the doubt. We didn’t not text you back on purpose. We really did want to take you up on that offer to meet up at the park. We’d love to be out past bedtimes on a random night or go to every social event we’re invited too. When you have a toddler with autism, so much of the intervention is hands on and requires our whole physical, emotional and mental involvement. We get distracted easily and don’t always get to respond to correspondence in a timely manner (or at al,l if I’m being honest). Because of that schedule I mentioned above, we just can’t make every event and not every event is going to be an environment that works for our daughter. We aren’t doing it to snub you. It’s not a subliminal message about how we really feel about you. Most days we can’t see past the tip of our nose and we’re just doing what we can to keep our heads above water.
If you know an autism family, I hope you take the time to learn about them and find ways to support them. They need you to learn about them so that you can help them and spread awareness that autism isn’t something scary or all that foreign. We really are more alike the average family than you may think, just with a few modifications here and there. Above all else, we need to be treated differently because that’s just the way the cookie crumbles. But, we don’t want to be thought of, or treated, as anything less because of those difference.