A Different Kind of Autism Awareness Month

A Different Kind of Autism Awareness Month

April is Autism Awareness Month, but unfortunately we will not see a Walk for Autism, Autism 5K, cookie fundraisers or Awareness Day celebrations during this extraordinary and unprecedented time.That doesn’t obviate the need or desire to increase awareness and understanding of autism throughout our country – and the world. It just requires some creativity to penetrate the consciousness of a population whose attention may be focused on the Coronavirus pandemic, social distancing and flattening the curve.

This is the 48th anniversary of the first Autism Month and in that time awareness has indeed exploded in concert with the incidence of the condition. Yet there is much work to be done before communities and policy makers have a firm grasp of the abilities, challenges and needs of autistic individuals. While the Covid-19 pandemic is a sudden global health issue today, autism is a daily global health issue that has been growing for decades and will continue into the future.

To recognize Autism Awareness Month while maintaining a safe distance from others will require individual initiative  and creativity this year. Here are just a few suggestions for actions you can take to promote understanding of autism and autistic individuals.

1. Find Events That Have Been Moved Online

Not all events have been cancelled. For example, the South Austin Support Group in Texas has been moved to Google Hangouts, where parents and caregivers can find a supportive community to discuss issues they face. A similar group in El Paso has been moved to Zoom, where participants can see and talk to each other in real time.

2. Share Best Practices with Others

You likely know people in your community who struggle with the issues around autism, whether they are autistic adults, parents of children with autism, caregivers or others. Take this time to reach out to one or more of your neighbors to lend support and trade tips you have discovered.

3. Celebrate Your Child’s Accomplishments

With all the stressors that Covid-19 brings, it is easy for parents to become despondent about their children’s progress. More than ever, this is a time to appreciate whatever strides your children have achieved. Take a little time each day to congratulate yourself and celebrate your child for the progress they have made.

4. Educate Your Co-Workers About Autism

You may be reticent about sharing your personal issues with co-workers, but Autism Awareness Month provides an opportunity to make an exception. And while you may not be working alongside your co-workers these days, you’re probably still communicating with them extensively. Discussion of the effect of distancing, school closures, and changes in routines on home life is the perfect entrée to a short education of the challenges and triumphs of having a child with autism.

5. Join a Webinar

Catch up with the April 4 webinar Autistic Explosion with Dr. James Coplan, who employs 3D modeling to illustrate the scope and types of autism. It has been recorded and is available online.

6. Support an Autism-Friendly Business

Families for Effective Autism Treatment in Louisville has created a registry of autism-friendly businesses in their area. Verywell Health, an online resource for medical information, has compiled a list of autism-friendly national businesses that includes companies whose products and services you could be purchasing now, like Microsoft, Home Depot, Walgreens, Ford and Smile Biscotti. These companies are intentional about hiring and training autistic individuals.

7. Lobby Your Legislators for Changes During the Covid-19 Crisis

Writing for Spectrum News, disability rights activist Ari Ne’eman has identified several legal constraints on caregiving to people with disabilities, including autism. He encourages others to lobby for removing caps on worker overtime, permitting family members to serve as support workers, preventing “temporary” institutional placements and ensuring continued oversight of group homes and other institutions for the disabled. Read the entire article here.

8. Focus on Your Child

The best advocacy any parent can do is with their own child. Advocacy takes place with your child’s teachers, in your neighborhood, on the playground, at the City Council, or anywhere others need to be educated about autism and persuaded to treat autistic children appropriately.

9. Make Every Month Autism Awareness Month

With two percent of children born today on the spectrum, ignorance and misunderstanding of the issues affecting autistic individuals will have significant and long-term ramifications for our nation. Let’s work to improve awareness and insight year-round.

Published By:
Ronit Molko, Ph.D., BCBA-D

Helpful Tips for Your Child’s Routine Change

Helpful Tips for Your Child’s Routine Change

By: Ronit Molko, Ph.D., BCBA-D and Sally Burke, M.S. Ed., BCBA

The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.

Although families deal with planned schedule changes or transitions, such as school vacations and summer breaks every year, what we are currently experiencing is different. This is a sudden disruption to our everyday routines with the added pressure of trying to create a viable learning environment to accommodate home schooling or online learning as schools try to complete the year in a virtual environment.

This sudden disruption means that both teachers and parents have not had adequate time to prepare for distance learning and that children have unexpectedly been pulled out of school. Children rely on set classroom schedules and routines and seeing the same friends and teachers every day. Now add into the mix the cessation of center-based services, therapeutic interventions, and possibly in-home visits being limited or put on hold to help minimize the spread of Coronavirus (COVID-19) across the United States. This will likely cause confusion and uncertainty for many. Easing anxiety, setting up activities, and staying busy during these unexpected and possibly challenging times can help with this change.

Being transparent about the situation:

Easing any anxiety your child may be experiencing, due to the changes in schedules and routines, is the first step to settling in to a “new” temporary schedule. Children will perceive the added stress and anxiety in the environment and so it’s important to explain to your child what is happening in their world. Keep it simple with basic information and present the facts at the level appropriate for your child’s age and ability to absorb this type of information.  Even though you may be concerned yourself, it is important to model calmness when talking about the virus. Children pick up on your social cues and how you respond to new things. If they have questions, answer them. Don’t be afraid to talk about it. Remind them that they are safe. And, remind them that this will end and they will return to school and to their favorite activities.

There are a variety of websites with information on how to talk to your child about the coronavirus. This website offers a social story about the change in schedule due to the Coronavirus as well as a printable PDF.

An increase in sensory needs, anxiety and meltdowns:

Individuals with Autism Spectrum Disorder generally have increased sensory needs and it is likely that those needs will not be met during this challenging time. Expect to see an increase in anxiety, depression and perhaps OCD. Additionally, since autistic individuals frequently have trouble communicating verbally, often the only sign that your child is experiencing anxiety is through external expressions such as meltdowns and increased self-stimulatory behaviors. It is likely that you may see new behaviors in which your child may not have engaged in previously.

It is important to provide the space for your child to express his concerns. Russell Lehmann, motivational speaker and author reminds us that outbursts and meltdowns are the expression of inner pain, overwhelm, confusion, stress and anxiety. Simply, be present with your child and listen more than you talk. Validation of their experience and a safe space to release their emotions is important in helping to move through it. Helping children take long deep breaths throughout the day will calm the nervous system (both yours and theirs) and help to mitigate the build-up of stress and emotion.

Establishing routines:

It helps to create a routine at home that provides consistency and predictability. If your child does better with visual schedules, there are great resources available to you on the internet that can help you create your own daily written or visual schedules. We tend to take for granted that we know what is coming based on the time of day (12 means lunch is near), but many of our children can’t associate time of day with certain activities. Creating a schedule will help allow them to see what’s coming next throughout their day and may help to lessen some challenging behaviors that may emerge due to their lack of routine.

If this feels overwhelming, try creating mini-routines for different parts of the day; a waking routine, a morning play routine, a “schooltime” or learning routine,  a lunch routine etc. This is also a great opportunity to create and teach hygiene routines such as handwashing.

If you are receiving in-home ABA, seek help and advice from your BCBA to assist you in developing a daily schedule that will help meet your family’s needs. There are also greater resources available, via Telehealth, to receive parent training from your BCBA.

Staying busy, especially during your child’s typical school, daycare or ABA-service hours is the next step. The solidarity of many world-wide educational and additional sites offering free online resources is remarkable during this time of uncertainty. Educational sites, as well as museums, zoos, and even Disney are offering virtual treats for children of all ages. There are free options for temporary internet service if your family needs it. This is also a time to connect with your children in new ways- cooking or baking, playing cards and boardgames, taking a walk, making up games, and learning life skills. Alternate your schedule between electronic activities, written work, crafts or projects and playing inside or outside when available. Use transition warnings (timers, first/then statements and choices) whenever possible throughout the day to help navigate and manage their new schedules.

Remain calm, set up a new daily routine and stay busy. And remember that patience, not perfection, is the key. Know that this is going to be hard- taking it moment to moment makes it more manageable. These tips should help minimize the effects of these sudden and unexpected events on your child and your family. Stay safe and healthy.

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