Holiday Reminder: “One Size Does Not Fit All” with Autism
By Jeffrey Deutsch, Ph.D. and Shannon Doty
The holiday season is a time of friends, family, parties, food, and gifts. It is also a time of tight schedules, inter-personal drama, and occasional overspending. Yes, we all know that holiday cheer comes with its typical share of stressors, but adults with autism spectrum disorders may face a completely different set of challenges than you might expect. Specific sensory needs, unexpected social demands, and changes in routine may be overwhelming to an autistic individual during this time. As friends and families of adults with autism, we can do our part to ease these stresses and help them better cope with all of the holiday parties and family gatherings. Madison House asked advisory board member and self-advocate, Jeffrey Deutsch, Ph.D., to comment on what the public should know about autism and the holiday season. Together, we’ve come up with a list of suggestions that we hope you and your friends find helpful.
1. If you’ve met one autistic person, you’ve met one autistic person
Some people on the autism spectrum have sensory sensitivities, which vary widely from person-to-person. Others may not have these sensitivities. There are people on the spectrum that may find it intolerable to wear certain fabrics, wear shirts with tags, have their bare feet move across carpet, etc. Some might call this pain, but these feelings are pretty much sui generis (in a class by themselves).
These sensory issues can also be directly relevant in the holiday setting. For example, a person on the spectrum might be reluctant to wear certain clothing garments or eat certain foods that are considered important for the season. In being mindful of these sensitivities, gift buying for someone with autism can be a little more challenging. When purchasing a gift for a someone on the spectrum, consider asking the individual directly what he would like, if he has any special interests, etc. If you are still unsure as to what to buy, Visa gift cards can be used anywhere Visa debit cards are accepted. This is a great option if you’d like the recipient to be able to purchase his or her own gift with flexibility similar to cash.
2. The Right to “Alone Time”
Many people on the autism spectrum are introverted. It is important to remember, especially during the holidays, that things can get overwhelming, and we all value the opportunity to duck out, go off to another room, or take a moment outside and be alone. Those who are socially oriented should take note that not everyone shares their desire for company, and even those who do may not feel like chatting at a given moment. Even with the best intentions, insisting on trying to talk to someone who has asked to be left alone or reprimanding them for being “unfriendly” may be perceived as a form of harassment. A good rule of thumb: People define “personal space” differently. Try not to apply your own definition to the person standing next to you.
3. Practice Tolerance
Be tolerant of certain behaviors even if you don’t ultimately accept them as appropriate. This means that it is okay to insist on certain standards of decorum, such as politeness. However, an individual deviating from socially acceptable norms does not necessarily indicate rudeness. It is okay to correct inappropriate behaviors, but try not to get upset at the person because his intentions might be well-meaning. Pulling the person aside privately and teaching acceptable behavior is one good way to approach this scenario.
4. Plan in Advance
People with autism have a tendency to be at their best when they know of plans in advance and when those plans are adhered to within reason. Changing plans midstream places undue challenges in a variety of different areas. Make a conscious effort to explain to our autistic loved ones how a future event will ensue as it could alleviate a stressful situation later. Dr. Deutsch provided a hypothetical scenario to explain how one with autism might experience a change in plans:
“If you first say, ‘We’ll go to Grandma’s on Thanksgiving 5-8pm’, and then, the day before Thanksgiving, say, ‘Actually, instead of going to Grandma’s house, we’ll all go to Outback Steakhouse from 7 till close,’ we may get cranky. We might have visualized our Thanksgiving in advance: first, doing whatever we do at home until it’s time to leave, then being at Grandma’s house in a familiar atmosphere (including only being around people we’ve at least met before), and then going home to watch a movie before going to bed. Now, we have to change that visualization to doing chores for a couple of hours at home, going out to what may be an unfamiliar restaurant packed with definitely unfamiliar people — who may or may not take our stimming or other habits in stride — and afterwards having to go straight to bed due to the late hour. That change may not give us time to mentally prepare.”
5. Dietary Restrictions
Many people with autism are on special diets in which they cannot consume certain ingredients such as gluten or casein. Just as you would provide options for your vegetarian friends, there is a need to make provisions for these guests. If you know that someone with autism will be attending your holiday event, ask if the individual has dietary restrictions. This way, you can prepare suitable meal options for that person and everyone can be included in the festivities.
6. Generous Monetary Gifts and Benefits
If you would like to make a generous gift, (e.g., money or property to a loved one with a disability), plan carefully. Otherwise, you could jeopardize your loved one’s ability to receive Supplemental Security Income (SSI) and Medicaid benefits. Certain assets, including cash in the bank, could disqualify your loved one from benefits. Some agencies will specifically ask recipients if they received any kind of financial gifts over the holidays — and they may ask again after the recipient’s birthday. If this happens, benefits may be reduced by part or all of said gifts. Please consult a financial advisor while making this decision.
About the Contributors:
Dr. Jeffrey Deutsch, having first heard about Asperger Syndrome (AS) — and the possibility of his having it — in his mid-thirties, has gone through decades of Home-based Experiential Lifelong Learning (HELL). Now, he uses inspirational speaking, consulting, training and coaching via his practice, A SPLINT (ASPies LInking with NTs), to help people on the autism spectrum better relate to everyone else…and vice versa.
Dr. Deutsch sits on the Advisory Board of the Madison House Autism Foundation and also actively works with Toastmasters International and the Cornell Alumni Admissions Ambassador Network. He is happily married to Emily (an NT) and they raise their toddler daughter, K.D. (Kid Deutsch). You can find him here.
Shannon Doty, Coordinator of Special Events and Social Media for Madison House Autism Foundation, tutors a special needs adult, and is an IISS provider for Changing the Lives of Children with Autism. Recently obtaining her B.A. in psychology from UMBC, her greatest goals are to foster meaningful connections with those on the spectrum and their families, increase autism awareness through social media and blogging, and creatively help to solve problems affecting autistic adults and children. While she is not busy working on the Autism Housing Network, Shannon can be found cooking up culinary masterpieces at her apartment in Silver Spring, MD.