I’ve been spending time reading the blog posts of my friend and colleague Dr. Wendy Sue Swanson, also known as Seattle Mama Doc. Wendy Sue is a formidable blogger. Frankly I’m jealous as I don’t know how she manages to write so much, so well and with such heart and humor. What I find so engaging about her posts is how personal and real they seem to me. She’s frequently describing situations in terms of her life as a pediatrician and a mother. The Autism Blog that we at the Seattle Children’s Autism Center have been producing is a group effort. Many of us have written blogs about issues we want to share with the general public, but sometimes our blog seems to lack the personal touch that we all feel as members of the Center. Thinking that, here is my contribution on a more personal note.
First a confession. I am not the parent of a child with an autism spectrum disorder (ASD). When I try to write about ASDs and families’ experiences dealing with this issue, I do my best to understand what they experience, but admittedly never really can know what their life is like. A question we pediatricians frequently get asked is, “If this were your child, what would you do?” Frankly, most of us throw our hands up in despair because though we do think about this question, we know in our hearts that we can never answer those questions. Having said all that, I do feel I have lived with autism almost every day of the last 10 years of my life. I think therefore I have some validity in talking about what it is like to live with ASDs.
Before I tell you about what I saw this last week, I have to say that all the “cases” I mention are not these children’s real names. Nevertheless some families where I’ve shared more specific details have given me permission to tell their stories. My day started with Mrs. X bringing both of her twin 12-year-old boys to see me. Jared and Landon (not their real names) are severely affected by autism. They are non-verbal, off in their own worlds, and have some pretty severe behavior problems. These can include screaming, hitting, biting, and pinching. Sometimes there are reasons one can figure out for these behaviors, but most often not. The twins have trouble being near each other. One is seemingly so frightened of the other, that when driving, one has to sit in the back seat and the other in the front seat. The sound of one boy screaming makes the other hide or attack. New situations can be huge stressors; even having a bowel movement can be a trigger for a meltdown. Both boys have benefitted from being on strong medications, which modify some of their extreme behaviors, but by no means eliminate them.
In addition to these two boys, the family has another set of typically developing twin boys aged 13 ½. Yikes, two sets of twin boys!! Jared and Landon’s older brothers are an enormous help to their younger sibs. For example, they are excited because this next year they will all be going to the same middle school and the older boys want to ride with their younger brothers on the “little special education” bus. They live some distance from Seattle, a ferry ride away.
If that is not enough challenges for any family, mom tells me she just graduated from a community college on the dean’s list having completed an AA degree as an honors student. She was offered a scholarship from Harvard University to finish her Bachelor’s degree, but had to turn that down and instead was accepted at the University of Washington. She hopes to go on to a Masters or even PhD in future years. Frankly, I wondered how she is going to go to the UW, be the mom of two sets of teenaged twin boys, two of whom have severe autism and travel from a far distance to Seattle to go to classes. Nevertheless, when I offered a possibility of having the boys see a behavioral psychologist at the Center, who would help set up an intensive home program with some funds through Division of Developmental Disabilities (DDD), she just added that to her list and said, “Let’s do it.” She has a wonderfully supportive husband and generous other children to help but even still I cannot imagine having that amount of strength. WOW!!
Not all stories are so positive. Eduardo (again not his name) is 6. He too is severely affected by autism, non-verbal with very problematic behavior. My interview with his mom was supported by a Spanish interpreter. His problem behaviors include taking his clothes off in public, peeing and pooping in public, irritable and aggressive behavior, hyperactivity, not sleeping, coming into his parents’ bed and awakening them by head butting, and taking off his seat belt when riding in the car!!
I’ve been trying a number of medications and medication combinations to help with his more problematic behavior, so far with little success. I advocated he receive extended school year services (summer school), but his school district did not have the funds to provide that. We’ve been waiting over 6 months for approval of a vest device that would attach to car restraints to keep him safely in the back seat while traveling. Funding for an enclosed bed, which would be a safer environment for him to sleep, was declined by his insurance provider as well. He has gotten out of bed and pulled a dresser over on himself in the past. The only safe environment for him now is to sleep in his parents’ bed where he thrashes and head butts much of the night. No one gets much sleep in that house.
And then there were the many small triumphs. Sarah is now toilet trained completely at age 9. Alex (8) used to pick his skin raw, so much that his scars made someone think that he was being abused. His mother had to even put up with a Children’s Protective Services (CPS) investigation. Fortunately medication has stopped his skin scratching and his mom has a new and better relationship with his school nurse. Cody is much less anxious since we stopped some of his medications. Julie (12) has her own locker in middle school with a combination lock and gets greeted with high-fives by all the kids in the hall as she comes into school each day; she even knows all the kids names. Kevin (15) won a gold medal in a Special Olympics skiing slalom race and walked by himself to a local store during a family summer vacation in the country to buy himself a Coke– he can barely talk. And Ian (4) said, “Oh mommy, train tracks,” the other day, one of his first information sharing sentences.
What I love and hate about autism is that I get to work with an amazing collection of people whose strengths, sorrows, triumphs, and challenges are an unending source of inspiration to me. I hate it that, sometimes, my skills produce what seems like so little help, that the system seems indifferent to the needs of these children and their families, that we don’t know enough yet to make more of a difference. I love the opportunity to share these triumphs and see these wonderful young people make progress, grow, learn, and to watch their families thrive despite hardships and sometimes, help them make progress. Hearing these stories is what gets me out of bed each morning.
What gets you out of bed each day? Tell us your stories.
Your vivid descriptions of the challenges and triumphs that families are facing is educational, overwhelming and powerful. This entry certainly does have a personal touch. It gave me a glimpse into:
Some of the day-to-day issues parents of children with autism face, and
What it would feel like to be a clinician who deeply cares for a family, uses all of the science and experience available to help them, then has to stand aside to hope for victories, small and large. Thank you.
Chuck, thanks for the honest and compassionate sharing. I’m grateful you are here. You are such a huge support to these kids and families, sharing your wisdom and care.
What gets me out of bed each morning is listening to the dictations of the many, many providers here at Childrens who provide the kids and their families with such excellent care and compassion. I hope that 1 day I can be an excellent provider to the children here as I feel Seattle Childrens is still the best place to work.
Chuck,
Thank you for this beautiful post. The honesty and integrity with which you write are inspiring to me.
I think we all feel this way as doctors….that our help is somewhat limited and futile, not effective, or even unhelpful at times. It may be some of our biggest fears. The days that feel the hardest for me in clinic are the days not only when I don’t know the answer to a question but I can’t find anyone else who does either. That terrible lurking feeling when all that we know from our training or our experience sometimes doesn’t do any good in a child’s life. When you said, “what I hate is that my skills produce what seems like so little help” I couldn’t help but nod. It’s the curse of having the great privilege to provide clinical care…sometimes we just don’t have all the tools we need. That’s the beauty of academic research. Hope for the future when we know more.
But you also are just so lucky. That you are invited into childrens’ lives and allowed to provide guidance. And as you and I and all of us lucky enough to take care of children in and out of the hospital know, it is true fortune to get a chance to witness and share and listen and help. What we get from clinical care is far more than we ever give. Lucky us.
I’m thrilled all of you are writing this blog. I know you are providing insights and support unmatched elsewhere. Thanks for all you do!
Thank you for such a wonderful blog. It is so moving to read about your daily work and interaction with families. Your dedication and passion is obvious and motivating. As a parent of a child with special needs, please know that your dedication and on-going work in the treatment of autism makes such a difference to families. What may seem like little help on your side is often what makes the greatest differences in our lives- the most important of which is how you listen and care. Please don’t underestimate the power of that relationship as well as the thousands of small ways that you help and continue to help. While the challenges in the community and in autism treatment are still there, it is the partnership with providers like you that make that journey doable. Thank you.
Thank you, Dr. Cowan.
The question that you pose is interesting. What DOES get us out of bed each day? Honestly, on some days I jump out of bed, excited to embrace the world and help guide my children (one of whom is autistic) through their days. Yet, on other days, I would like to pull the blanket over my head, go back to sleep, and return to the dream where autism didn’t determine how the 5 people in this household are going to leave this house and enter the world each morning. Yes, some days are glorious, but others leave a lot to be desired.
Each morning, I listen for the pitter patter of my son’s foot steps as he comes down the stairs. I never know which version of him is going to appear. There is a moment where I just hold my breath and listen…wondering if the light, curious, fancy-free footsteps will be bounding into my arms, or the heavy, uneven, angry footsteps will be unleashing upon us.
I so appreciate your wonderful post! Part of the huge adoration that many of us feel for The Seattle Children’s Autism Center is exactly what you have expressed here. Feeling like someone is sharing in this experience, wanting to help, and admitting what is realistic is A LOT for those of us who wake up with autism in our lives every morning and go to sleep with it every night. Thank you for helping inspire hope!
Much gratitude,
Karen Kaizuka
Dr. Cowen, I have a child with autism who benefited tremendously from high doses of EPA fish oil. He displayed aggressive/violent behavior like some of your patients and after starting Nordic Naturals EPA Xtra 6 gelcaps per day (as recommended by his chiropractor), the incidences became less severe, less frequent and within about 8 months diminished completely. Here is a study abstract on it:
http://www.ncbi.nlm.nih.gov/pubmed/16777665?dopt=AbstractPlus
My son also benefited from several alternative therapies – chelation with Alpha lipoic acid and DMSA for lead, mercury and aluminum toxicity, a special diet free from processed foods and excitotoxins like MSG, high in protein and fat, no sugar, no artificial colors/flavors, gluten and dairy free, corn, soy and yeast free, all of this was and is necessary for his health to be maintained. He is now on 2 gelcaps of EPA Xtra per day and doing better than ever. Vinpocetine, a nutritional supplement, helped him develop conversational language. We are still having trouble with articulation. I wish you doctors were able to try more alternative methods, we are seeing a ton of progress.
I’ve always been fascinated about the potential that dietary intervention might have on everyone’s health. The US diet is on average horrible. Too little fresh ingredients, too much processed food, too much sugar, fat and salt. Fish oil seems a healthy choice. We Americans don’t eat enough fish and other seafood. On the other hand fish oil as well as other preparations of increased omega-3 fatty acids and its purported benefit for treatment of ASDs is as yet unproved. I just returned from the 11th annual International Meeting for Autism Research (IMFAR). I scanned all the reports from the last 3 years of IMFAR reports and there was only one study on the use of omega-3 fatty acid supplementation, which did not unfortunately see an improvement in behavioral or autistic core symptoms. The study used 58 children who were randomized to either omega-3 fatty acid or a similar tasting and smelling soybean oil. The study went for 12 weeks. Maybe that wasn’t long enough to see an effect but they did not in this study. We really need to test all these possible treatments, but if there is no evidence of benefit then I could not recommend them as effective treatments. The study referenced does show a very interesting paper from researchers from the National Institute on Alcohol Abuse and Alcoholism, one of the National Institutes of Health. This was a theoretical paper on the possible effects of inadequate omega-3 fatty acids on subsequent neurodevelopment but the paper specifically says it is not based on experimental data and the word autism is not mentioned in the paper.
I frequently say if a treatment is potentially helpful and there is little cost and no risk why not try it. Fish oil seems a healthy thing to take with suggestions of all sorts of benefits. Sadly so far it is not shown to help autism. By the way, I’ve been told by many, that Nordic Naturals is the best fish oil usually available in the US. If you’re going to use fish oil I’d use the best. My overall approach to any treatment, conventional or un-conventional relies on the principles I outlined in https://theautismblog.seattlechildrens.org/choosing-a-biomedical-therapy-and-autism/
The six year old boy likely cannot sleep because of GI pain/yeast overgrowth. That was my daughter’s problem, she too was unable to sleep for years on end. Removing not just gluten and casein, but soy, refined sugar, and all preservatives and artificial dyes and treating her with antifungals and probiotics (she had a prescription for antifungal medications off and on for a year or so, but now we just use natural remedies like grapefruit seed extract and oil of oregano) helped her sleep much better and much more comfortably. You can order probiotics online from different sources or find them at any Super Supplements, and fermented foods such as homemade sauerkraut, kombucha, and non-dairy kefirs are good sources also. The reason behavioral medications are not helping this boy is they are not addressing the pain he is in or the inflammation in his body. Trust me, he isn’t waking at night for fun, he is HURTING and is trying to communicate that he is suffering the only way he knows how. Getting inflammation down is the RIGHT thing to do for the sake of him and his family rather than placing him in an enclosed sleep space. He will still be suffering, only now he will not have a way to communicate that he is.
From my perspective there are really a number of possible causes for sleeplessness in children with ASDs and indeed sleep difficulties are quite common. So much so that this issue has been one of the research priorities of the Autism Treatment Network. The ATN, sponsored by Autism Speaks, is a collaboration of about 14 different sites across the country, that contribute patient data into a centralized database. This approach has allowed the ATN to collect a large number of cases for study of certain problems. Dr. Yemi Kifle who is a member of the sleep disorders program at Seattle Children’s has served on the sub-committee of the ATN and is very familiar with these issues in children affected by ASDs. She recently gave a talk to our group and showed us some very interesting data. Certainly we do know that many medical conditions can disrupt the sleep of children and teens with ASDs. Seizures during sleep can cause disrupted sleep patterns. So can obstructive sleep apnea. The notion that GI pain may cause disrupted sleep has been clearly documented. The most common cause for nighttime GI pain is acid reflux. Constipation is likely the second most common cause of GI pain. It’s also important to say that in non-verbal children being sure that a particular behavior is pain is often reasonable but not always true. Abdominal pain symptoms for me usually include a pained expression on someone’s face, increased heart rate, sometimes sweating, self-pressing on the belly like one might do when laying over a pillow and pressing down. I acknowledge that many believe that yeast overgrowth in the intestinal tract somehow accounts for poor GI function, and perhaps GI pain. As yet I’ve not seen any scientific evidence of this occurring. In fact if one looks at medical/scientific databases like PubMed, the database of the National Library of Medicine, which anyone can use, entering the search codes “yeast” and “autism”, there was only one study reported in the past 10 years about that subject. That study did not show any relationship with the amount of yeast cultured from the GI tract and autism severity. On the other hand if you enter the same search criteria into Google you get hundreds of hits. Look carefully at them and you might see that most are either companies selling something or “testimonials” of someone saying their child was helped by yeast therapies. I cannot refute these opinions and observations. Nevertheless they’ve really not been written about in conventional scientific journals so I don’t consider these webpages evidence.
The ATN data on over 1,700 autistic children who have filled out extensive sleep questionnaires and sleep studies suggest that GE reflux is the most common GI problem associated with disturbed sleep. Nevertheless, despite the frequency of constipation and GE reflux in the general pediatric population, our experience at Seattle Children’s Autism Center and in the sleep disorders clinic is that GI problems affecting sleep are actually fairly UNCOMMON. Some sleep problems are due to Restless Leg Syndrome, which is often caused by low iron levels. A simple blood test can detect this and begin sometimes very effective treatment. This all being said the biggest majority of sleep problems are due to the behaviors associated with ASDs, sensory problems, difficulties with routine change and others. If you are more interested in this subject a useful document comes from the ATN, which you can access with this link: http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/sleep-tool-kit
Hey Charles,
We work with kids on the autism spectrum from all across the country and the amount of the parents we’ve met that have given up on their child when they are not swimming within a month is depressing. However the amount of parents that have stuck it out and now have a competitive swimmer on their hands keep us going. It seems like you enjoy those little victories just as much as we do. Keep rocking it!
Dr. Cowan,
You diagnosed my son with moderate Autism back in 2004. We soon after moved to Wisconsin to be closer to family. I know at the time there was not much to tell me that was positive and mainstream, but I want you to know that my now 16 year old boy is mainstreamed as a junior in high school with minimal accommodations, competes on his school’s Forensics team, is in choir, and on track to graduate with his class and attend some type of post secondary educational institution. There is hope for our children if we are dedicated and creative with interventions.