According to the Centre for Disease Control and Prevention there are now 1 in 68 children diagnosed with autism spectrum disorder (ASD). This works out to nearly 2 million children in North America and the numbers keep growing.
When a parent receives the news that his/her child has autism, there are all kinds of emotions and thoughts that enter his/her mind.
Many of these thoughts are related to fear: fear of the unknown, fear of figuring out the best way to help his/her child, and fear for your child’s future.
Wanting to do right by his/her child is something that all parents can relate to but becomes even more of a concern when you receive the news that your child has ASD.
This article is about offering hope to those parents that are just starting a journey with a child with autism.
It offers hope because there is a treatment that can help your child and hope because there are things that you can do for yourself, as the parent, to help you advocate for your child as he/she is going to need you to.
Here are two practical tips that all parents who have learned that his/her child has autism need to know:
1. There is a treatment that can help your child
There are many different treatment options that claim to help children with autism. A simple search on the Internet can lead to hundreds of options. As a result, it can be very daunting to attempt to identify a treatment that would work for you and your family while you are still just processing the diagnosis that your child recently received. One treatment option that has been backed up time and time again in the literature is one that is based on Applied Behavior Analysis (ABA).
I have worked with hundreds of children with autism and their families and I have seen firsthand the power that ABA can have in improving quality of life.
For some children this has meant teaching them to communicate, literally giving them a voice so that they can get their needs met, for others it was teaching important social skills that will allow him/her to interact with his/her classmates. These kinds of goals are set for each unique child with autism and are based on his/her unique profile.
Goals are set that work on teaching all kinds of important skills, not just one or two. Granted, I am somewhat biased, but please don’t take my word for it.
There are literally hundreds, in fact, in excess of 500 published articles in peer reviewed journals that demonstrate that ABA is effective in teaching individuals with ASD important skills that will improve his/her quality of life. In North America, government agencies and insurance companies are spending billions of dollars on treatment for individuals with ASD that is based on ABA because they know that it works.
If you want to learn more about other treatments or even about ABA itself, check out this article posted in the Association for Science and Autism Treatment (ASAT) that describes how to identify treatments that have good evidence supporting their use.
2. On your journey you may experience differing levels of stress: here is how you can cope
Parents who have a child with ASD experience financial and emotional challenges that most other parents cannot even fathom. At all stages of development, families of individuals with ASD experience high levels of stress (White, S. E., McMorris, C., Weiss, J. A., & Lunsky, Y., 2012). When parents first receive the diagnosis for his/her child they may be grieving the loss of what they thought would become of their child.
This compounded with the stress of trying to identify an appropriate treatment and then navigating the system once you have determined which treatment or provider to use can be another source of stress that parents with children with ASD need to deal with. It has also been shown that when a child with ASD presents with significant challenging behavior, that it is more stressful for parents (Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D. & Einfeld, S., 2006).
Therefore, choosing an appropriate ABA provider should help mitigate some of the stress associated with the different/unique challenges that arise at different developmental stages for your child (e.g., transition to school, transition to high school etc..) and with dealing with challenging behavior.
In some cases, despite your best efforts, the financial, and emotional challenges may lead to difficulties in coping and in some cases what may be described as a crisis situation. If you are a parent and are finding it difficult to cope, here are three things that you can do:
1. Get connected with other parents
It is always a great idea to connect with other parents that are experiencing some of the same things that you are. Every child with ASD is unique and presents with unique challenges and stresses but it can help to speak with someone who can relate to the decisions and advocating you are having to make and do.
2. Acceptance and Commitment Therapy (ACT)
Helps people deal with difficult thoughts and feelings, emphasizes the acceptance of unpleasant emotions, helps clients develop goals that are based on his/her personal values, and helps clients commit to actions that may lead to them achieving those goals. ACT has been successfully used to treat a variety of specific psychological problems including anxiety and stress (Bond & Bunce,2000), depression (Zettle & Hayes, 1986) and in helping parents cope with the stress and depression (Blackledge & Hayes, 2006).
It is not necessary to have been diagnosed with a mental health condition for ACT to be of relevance to your quality of life. I recently used it with my college students in a course that I was teaching at a local university. It involved 10-15 minutes every class (which were 3 hours in length every week) to do a mindfulness or other ACT exercise. Some of my students reported that they think it should be implemented in all classes at the university because it really helped them deal with some of the stresses that they were encountering on a week to week basis.
One of my students reported that our class was a safe place that she looked forward to going every week. Many of the students also practiced the exercises in between classes and with the added practice those students reported that it helped with some of the stressful negative thoughts they were having about trying to cope with workload. Of course these are just anecdotal reports, but in conjunction with the empirical evidence listed above it may be something worthwhile investigating as you start this journey that may lead to varying degrees of stress. For more information on how to find an ACT provider you can check out the Association for Contextual Behavioral Science (ACBS).
3. Seek professional support from a local Psychologist or ACT therapist
If you are finding it difficult to cope and engage in your day to day activities.
In an article on this topic I needed to present practical strategies and resources that a parent can use to help mitigate some of the inevitable stress that they will encounter on his/her journey with his/her child with autism. It is important to also remember, and I am sure I don’t need to remind any of you this, to focus on the milestones that your child with ASD IS achieving and celebrate those. That your child is unique and to him/her you are his world. Connecting with other parents will allow you see that you are not alone in your journey. Check out this video of Mike Lake, a father of a child with ASD as he talks a little bit about his journey with his son Jaden.
White, S. E., McMorris, C., Weiss, J. A., & Lunsky, Y. (2012). The experience of crisis in families of individuals with autism spectrum disorder across the lifespan. Journal of Child and Family Studies, 21(3), 457-465.
Blackledge, J. T. & Hayes, S. (2006). Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child and Family Behavior Therapy, 28 (1), 1-18.
Bond, F.W., & Bunce, D., (2000). Mediators of change in emotion-focused and problem-focused worksite stress management interventions. Journal of Occupational Health Psychology, 5, 156-163
Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D. & Einfeld, S. (2006). Behavior and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50(12), 874-882.
Zettle R.D., & Hayes, S.C., (1986). Dysfunctional control by client verbal behavior. The context of reason giving. The Analysis of Verbal Behavior, 4, 30-38.
Sarah Kupferschmidt has her Masters in Psychology with a specialization in Applied Behavior Analysis (ABA) and is a Board Certified Behavior Analyst (BCBA) who has worked with hundreds of children with autism and their families since 1999. She has clinically supervised and trained hundreds of staff on how to implement treatment strategies that are based on Applied Behavior Analysis (ABA), she conducts parent coaching and training in the form of workshops for families and teachers on a variety of topics (e.g., safety skills, toilet training, language development, using technology to teach, and challenging behavior) just to name a few. She is a Part-Time Professor and Co-Founder of Special Appucations, which is an mhealth company that develops solutions for children with special needs using ABA to inform the instructional design. Sarah has appeared on Hamilton Life, CP24, CHCH news, the Scott Thompson radio show, The Bill Kelly radio show and on A Voice for All on Rogers TV and Mom Talk Radio.
This article was featured in Issue 44 – Strategies for Daily Life with Autism