Lately I’ve been thinking about how much time and effort it takes James and me to manage his autism. He’s having a great summer and his anxiety, mild OCD and motor control have been pretty darn good lately. His motor control, when strong, allows him to spell reliably on a letter board or keyboard. This is paramount for him because he can quickly communicate about any physical issue he may be having, anxiety he is feeling or sensory overload he is experiencing. It also just lets him express his opinions throughout the day which is really something most human beings like to be able to do! When he can talk or rather “spell” about his needs– his and our family’s quality of life is immeasurably better.
James and I come into contact with a lot of folks who struggle with autism. Often they ask how James manages to use his board consistently and how he handles college classes? The answer is a long one and it is multi-faceted. I believe that a crucial part of helping a person with autism manage daily life and achieve their goals is rooted in diet, exercise and what is known as “functional” medicine. I’ll write more about that at the end of this post but in the spirit of helping people understand how James manages the physical aspects of autism we interviewed him last week. Here is the interview:
Can you describe some of the physical aspects of having autism that you manage or deal with?
I, personally, am always tired. Not sleepy, but exhausted. I have learned that I can manage, but sometimes it wears me down. I also struggle with perceptual interpretations of my environment, and on bad days the smallest things send me over the edge. I have learned how to better adjust to noises and to focus my attention, but it still requires extreme energy. If I am sick or over tired, then my control weakens so I easily lose patience and my ability to focus, both on listening and my motor skills. The day then tends to spiral downhill and I lack the ability to change the course.
You once said your body is a renegade who is at war with your mind. Is this still accurate and in what ways has it changed over time?
The war still continues. I have gotten better at predicting the renegade’s attacks, but I am usually only one step ahead of it. I try to request breaks before it can catch up and overpower my reasoning. Sometimes I am caught off guard or too tired to even think ahead. Stress also puts him in overdrive and almost impossible to control. Over time he has weakened so if he does gain ground his effect remains less dramatic, but I still can lose the whole battle if I am not keeping him at a rest. Then, I still rely on my communication partner to keep me sane.
Have you noticed things that impact body control?
I notice changes based on exhaustion, stress, new movements, and hunger. Any of these will keep me from being able to focus on my movements. Then, I tend to revert back to my rote and automatic movements which fail to help in the moment and just frustrate everyone.
How does food, carbs in particular, impact your ability to control your body and manage your symptoms of autism?
I have noticed that carbs and sweets give me energy, but mainly instigate my stims. They act like a drug and make me feel like I have less control over my thoughts and actions. I love their taste and crave them, but I choose to avoid them because I do not like how they make me feel and act.
How does exercise impact your ability to manage your autism?
Exercise allows my brain to practice controlling my body. Even walking gives me something to do without constant stimulation from electronics or people. It is freedom from stims and makes me feel more organized.
You have spoken about the amount of focus and skill that communicating using the letter board or keyboard requires. What helps you use it more efficiently?
I recommend starting in a quiet place with what Shannon calls silly questions. These reduce the stress so it is easier to focus. For fluent spellers, we still need prompts and support when in new places or extra stressed.
Can you elaborate a bit more on things that help you use the letter board more reliably or efficiently?
I recommend working on long tasks or important messages with someone who knows you well. Imagine texting on a new phone that has a different layout and autocorrects you differently. The comfort of working with someone you know and trust is like the phone you can text on without thinking. I need that person to know me so I can focus on my thoughts instead of the mechanics of spelling.
Can you explain what anxiety combined with autism feels like? Also, what have you learned triggers your anxiety and what helps to keep it at bay?
I think anxiety and autism should be comorbid diagnoses. Autism makes my brain work fast and limits my ability to control where the thoughts go. Once I have one worry it spirals out of control. The same is true for stims, OCD, and any strong emotion. My anxiety tends to flare when I believe something important is out of my control or when something will have dire consequences. The thoughts just intensify and I lose control of my emotions. When I feel it starting, I try to distract myself with something happy or logic my way out of the loop.
Does taking supplements make a difference in your ability to control your body?
I believe they do, but I trust my mom to know how to keep me balanced.
I have a few thoughts on helping James manage the onslaught of a body and central nervous system that are broken. Ever since he regressed we’ve used a biomedical approach to healing him–implementing a wide variety of treatments that included chelation, hyperbaric oxygen, diet, supplements, homeopathy, and a focus on fixing a very dysfunctional gut. Some things worked more effectively than others but I don’t regret any of it except that it was extremely time-consuming and expensive. And James felt really lousy for a long time, he didn’t feel decent until about age 11.
After James began communicating through RPM I stopped being so rigorous about treatments and we all just enjoyed the fact that we had our son back! He could “talk” and we could get to know him. A year or two later we realized that all the hard work of real school and using a letter board was incredibly demanding from a physical standpoint and we needed to refocus our efforts on healing his body. I hired a functional medicine health practitioner with the goal of giving James more energy and focus and less anxiety. We’ve been at almost 2 years and it is working.
If you don’t know what functional medicine is here is a definition:
The Functional Medicine model is an individualized, patient-centered, science-based approach that empowers patients and practitioners to work together to address the underlying causes of disease and promote optimal wellness. It relies on a detailed understanding of each patient’s genetic, biochemical, and lifestyle factors and leverages that data to direct personalized treatment plans that lead to improved patient outcomes.
We’ve done a lot of things that I won’t detail here but a big shift in my paradigm is the “total load” approach to wellness. I ask myself when helping James what is his total load right now? He already deals with a major disorder, but what else is his body dealing with as far as exposure to toxins, stress, diet, lack of sleep or exercise? I’ve focused a lot on trying to give him nutrient dense, organic food when I can. He eats out a lot but we try to make it decent food while out and really good food at home. We’ve dropped a lot of carbs and put in more clean fats. If I know he is having a stressful school day we try to give him more walks and down time. We’ve looked really closely at supplements that support the brain, the mitochondria and adrenal glands. It is helping because he can handle a lot more school work (which is his goal) and he is much more emotionally stable. He still has meltdowns but they are fewer.
I really hope and pray that a cure will be found for autism. And I hope that our government and medical establishment will be honest about what is causing our children’s bodies to become so ill and then start preventing it. But in the meantime people with autism live courageously with very broken bodies doing the best they can and we need to do everything we can to help.
Wow! What a profound description of the journey from both of you, James and Brooke. Thanks for sharing. Still so incredibly impressed with all the work and commitment to wholeness and progress and pushing forward at top speed. It’s a battle every day! Bless you guys!
Thank you Brooke and James! Very helpful!
Debbie! You have always been such an encouragement to us! Thank you for being so supportive. We miss you and Zack–our first friends outside our regular borders! : )
Brooke and James,
How timely your comments on autism and managing iunintentional behaviors are! I am at a conference for persons with autism who communicate by typing in Put In Bay Ohio with my daughter (21), a friend, and her son (13). The focus yesterday was gaining control over their bodies so intentional behaviors could surface more regularly. While this was exciting to our children- learning the new strategies and realizing how much practice they would take was overwhelming. With the right supports, all things are possible!
I love what JAMES said – that autism and anxiety should be comorbid conditions. I could not agree more. Thank you James for giving me as a parent valuable insight to help my daughter as she can not express herself as well as you can. We also backed away from other valuable biomedical approaches when typing came in and now are turning back to the basics. I hate the constant battle you and others with autism must face with your bodies but am thankful to know my daughter is NOT alone. The friendships she has made with other communicators have given her “great hope”.
Thank you for sharing your faith and how it helps you navigate autism. This too has proven to be immensely help for us as we k ow the Holy Spirit is our advocate – he never leaves us or forsakes us.
We continue to look forward to your next blog! Continued success, Amy
Amy! Its great to hear from you, I am glad our blog post was timely! We are so glad when any insight is helpful to others who struggle with their bodies and the hard work of communicating by spelling. I remember reading voraciously (before James could communicate) anything written by someone with autism, just so I could understand him. And yes our faith is SO crucial to all of it. We need Him every minute of the day. All the best, Brooke