Autism in the Real World
In my opinion, the answer is not as complicated as it might seem.
First, know your child. If your son or daughter actively dislikes or is upset by movies, malls or libraries - why force them to come along? Of course, you may need to pop in and out quickly to run an errand, but surely there's no need to involve your child with autism in a two-hour shopping expedition when the outcome is almost certain to be problemmatic for you, your child, and the people around you.
Second, have a plan. Sometimes the situation requires that you bring your child with autism along - say to a wedding or funeral - even when you know your child will have a tough time. When that's the case, it makes sense to do a little research and planning ahead of time. Your child may do better than expected, but if not you have a graceful escape pre-planned.
Third, take risks - but go with the flow. You never really know when a child - any child - may outgrow fears or discover a new interest or ability. You may, for example, think your child with autism will hate the art museum, but be amazed and thrilled when he stands in awe in front of a masterpiece. Autism is no reason to avoid the art museum, but it IS a good reason to be prepared to leave quickly if things don't work out. Avoid the pitfall of spending too much money on an experience to feel comfortable walking away when it doesn't work out.
What are your tips for managing autism in the real world? Have you been pleasantly (or not so pleasantly) surprised when things go unexpected right or wrong?
Comments
Lisa – What great tips! Thanks for addressing an issue that comes up over and over again for families and educators and therapists who want to encourage their friends with autism to explore and enjoy the big, wide world. Among many other issues, we always need to make a PLAN B for toileting. Here’s a question from a mom and the reply as posted on FAQautism.com:
“I’m a mom with a grown autistic son. We love to get out and about often, but we struggle a bit with the issue of public restrooms. Not only do I worry about my son’s safety when sending him unattended into the men’s restroom, but I also worry because his toileting habits are often in ‘poor taste’ and he occasionally needs help with toileting and personal hygiene. I need some suggestions so we’re not just isolated at home.”
Dear Adventurous Mom: Your question about public restrooms is one that has haunted many, many parents. Even more challenging than a mom with an adult son is a single dad with a daughter who needs assistance. Many men’s rooms do not have doors on the stalls. And guys run into another layer of issues if their daughter is a screamer or has loud echolaic speech. Things become even more challenging as their daughters grow into teenagers, then young adults. So, consider some of these ideas to help with this very challenging issue.
+ Pre-plan trips into public places. Scout out places that have family restrooms and single-stall restrooms with doors that lock.
+ Have your son go to the bathroom before leaving home.
+ Talk to managers of restaurants, stores, your church, movie theaters, parks, and other public places that you frequent. Request a designated family restroom that has some space, a single stall, and a lockable door.
+ Limit liquids on long road trips where you’ve not had a chance to locate family restrooms or single restrooms with lockable doors.
+ If none of the above work, or in an emergency, forget sending him into the men’s room. Just take a deep breath, say a little prayer, ignore the disapproving looks of others, and march your son right into the handicapped stall of the ladies room. If you encounter anyone on the way, or if anyone complains, just smile sweetly and say, “I’m sure you understand that my son is diagnosed with autism, and he needs my help. Thank you for being so understanding.”
+ A friend told me she carries a sign in her purse that she can put on the door handle of a restroom. It says “OCCUPIED!”
+ You could even have some business cards printed to pass out if your son has a meltdown or needs to accompany you into the ladies room. It could say something like: “Thank you for your understanding of my son who is diagnosed with autism. He is a fine young man, but sometimes has difficulty with communication, social skills, or changes in routine. For more information about autism spectrum disorders, please click on http://www.nimh.nih.gov/publicat/autism.cfm”
Cathy Knoll
http://FAQautism.com
When my son was 3 or 4, I got my worst injury ever, from him. I’ve probably told this story a zillion times too, about the clinic check-in line and how well my son didn’t do in lines. It was winter and he had plain winter boots on and forcing him in that line I was kicked by the boot. My knee still hurts.
There after, I brought my ‘tag team’ to the clinic. Doctor appointments were arranged by my sister’s schedule. By doing this, over the years eventually we both together can stand in that line.
When he was younger, every one knew what isle we were in at the grocery store. ever since he was old enough to sit in a cart, my kid screamed. So, since I could hardly shop, it threw my kid into a sensory over-load and I’d bet the screaming hurt many ears, for years I never took him to any store. Eventually and slowly, I had my sister take him into stores. My son is so passive with others around and he’s still this way at school as well, but with her being there, it helped him ease into going into stores and holding in his reaction. These days, we mostly have pleasant trips to any store.
In pre K, a story was read to him about zoo animals that my son took literal. For years, the mention of going to a zoo OMG no one say the zoo! you’re right, fears don’t always last forever
fears of bugs and spiders, those last a while!
Not everyone has a great sister or two like I do, so willing to be there to help with my son and me. Also, I went at my son’s pace. Allowing the opportunity to him, but allowing for that opportunity not to be so inflexible. When I was working back when, I had to get up 2 hrs early just to have time to chase down a child and dress him, not rush him and be on time. These days I went back to work part time, and even for this job and for school, I have to get up earlier so he doesn’t feel rushed. I also look for incentives, one day a week while working, we stop at the gas station for a treat first.
The real world often doesn’t allow for slowing down, rearranging plans or spur of the moment changes. But for the area’s that we can, slowing down to our kids pace of endurance in the long run can help them better adapt than forcing them.
Is it okay to take a child or teen with autism into the grocery store, the library, the mall, the theater – if he or she is prone to shouting, bolting, or making loud sounds? How far should you go to avoid creating disturbances for the people around you?
Well, my son is only 5 years old (HFA/Aspergers) so I can only speak from my experience, which is limited. Its only this year that he has been able to go to the grocery store with me without throwing a tantrum. We tried taking him to the movies a few times in the past year, but he can’t finish the whole movie without wanting to get up and walk around, and tends to talk and ask questions throughout it, which is distracting for other people, even other kids. We still can only do fast food restaurants, because as soon as he’s done eating he wants to leave. He also gets overstimulated very easily and starts jumping around and stimming.
Still, as hard as it is sometimes to bring him out in public, I think its absolutely necessary to teach him how to interact socially. Sure, its easier to stay home, but I am learning that as he gets used to going out more, the better his behavior is. I think a lot of it has to do with his attention span getting longer as he gets older and that he has more language skills now to communicate to me if he is frustrated with something. His special needs preschool has been great and now that he is entering kindergarten this fall, I am more confident than I was before that he will continue to develop better social skills the more he is exposed to things.
Just wanted to add that I now have a bunch of places I feel comfortable taking my son: the beach, the park, playgrounds, the community pool (he LOVES it there!) the amusement park (he likes bumper cars), camping in the White Mountains of NH and woods of ME (where we live), and now stores like Walmart and grocery stores.
That being said, I think the hardest part of taking him places is the reaction from other people when he has tantrums or shows aggressive behavior. I am shy and reserved by nature and have had to become a bit outspoken in the interest of my son. When someone sees fit to make negative comments about his behavior or my parenting skills (thinking he’s just being a brat!), I speak up now and let them know he has a disability. I try very had to teach him social skills, and what behavior is socially acceptable so that he can fit into “our world” but I also know that he has a lot to teach the world about acceptance of others who are different.