By Lisa Ackerman
I am going to share a little bit about our family’s autism journey with the hope that it will not only inspire you, but also demonstrate how essential patience is in this journey. I know that patience is the last thing you want to talk about because “the clock is ticking”. But truly, it needs to be discussed for what I have witnessed over the past 19 years working with thousands of families is that autism and healing takes time.
The Beginning of Our Journey
Our son Jeff was diagnosed with moderate to severe autism in 1998. We were not given much help or hope. The prognosis for his future was bleak (this word could not be a bigger understatement). Jeff had lost all of his speech and he consistently demonstrated 19 of the 22 symptoms of autism.
Jeff was also sick. He had extreme sleep disturbances, alternated between painful diarrhea and painful constipation, had mobile rashes that appeared in different parts of his body, and mis-dilating pupils. He felt miserable, which contributed to behavioral challenges. Can you blame him for acting out? I can’t – I know that if I had only one or two of the issues Jeff was dealing with, my behavior and social skills would be cause for concern too.
Co-Occurring Medical Conditions are Common in Autism
Not all individuals with autism have co-occurring medical issues, but, like Jeff, the majority do. “Research shows that over 95% of children with autism have co-occurring conditions, the average being 4.9” (1). Let’s take a moment to let that sink in… 95% of these kids are suffering from at least one co-existing issue, the average having nearly five conditions in addition to autism, such as: seizures, gastrointestinal disease, immune dysfunction, metabolic and mitochondrial issues, anxiety, sleep disturbances, obsessive compulsive disorder, ADHD, PANDAS/PANS, reoccurring and persistent infections, and more. What I have witnessed in my own family as well as in thousands of families TACA has served throughout the years is that, when these co-existing issues are treated, autistic symptoms lessen in severity and sometimes disappear altogether.
How Parents Can Help Improve Their Child’s Health and Quality of Life
Step One: Build a Strong Team
Surround yourself with positive people – people who are moving in a forward trajectory to help their kids. You can find great people like this through TACA. They will inspire you to keep going when things get rough. Almost all of TACA’s programs and services are free. In the rare exception that there is a fee, a scholarship opportunity is always provided. We exist across the United States and welcome your family at any of our events (2). If there isn’t an event near where you live, hook up with us online (3).
Build a team of qualified professionals. If you encounter a professional who tells you “There is nothing you can do”, “Here are our standard prescriptions”, or “That’s just part of autism”, I always recommend seeking out the opinion of another, more qualified professional (if you’re not sure where to find such an individual, please reach out to TACA for a referral). At some point, each of us will need to seek out additional options from different professionals. Each time I have done so, I have learned something more to help my son take that next leap forward. Having a good team and managing them well makes a huge difference (4).
Step Two: Utilize Tools to Help You Evaluate Progress
Your professional team should use standardized labs and diagnostic criteria to test and evaluate your child’s needs, concerns, and strengths. Do not forget these strengths. They can be used as building blocks (which is a topic for another time). TACA Blueprints are a great tool to utilize when it comes to which labs, test, and evaluations your child will need (5). This article on our website is also very helpful (6).
Your phone is a wonderful tool. Regularly use it to document what is happening in your child’s life. Taking frequent video of the good and the not-so-good times will help you capture the issues and the successes. These videos will be valuable along your journey for you and the professionals on your child’s team. These videos will also serve as an invaluable tool has your “autism journey time capsule.” You will be able to look back and see how far your child has come with your video montage. We have other documenting tools and recommendations here (5.)
Step Three: Hold on To Hope
Many of you have been travelling this journey for years and have treated a number of issues but still see little to no progress. Since 2005, there have been between 50-100 new studies come out each week pertaining to treatment options in autism (8). That’s roughly 36,000 studies! Perhaps not every treatment option in discussed in those studies will make a difference in your child’s life, but some will! Have faith in the science that has been and will be discovered. Jeff’s progress throughout his teenage years was phenomenal – this result happened because our team kept up to date on the latest research and utilized it. Working with trained physicians and paraprofessionals who regularly take the time to stay abreast of the latest and greatest research will ensure that your child has access to medical treatments and therapies that will address their unique needs.
This leads me back to Jeff… It wasn’t until 7th grade when we finally started seeing speech gains. Keep in mind, this was after years of allergy friendly diets, gastrointestinal treatments, detox and more. He had his first meaningful conversation at age 11, after nearly a decade of treatment. Each day was amazing because we were finally able to learn more about Jeff’s thoughts and his dreams! These amazing accomplishments occurred because we were able to implement some great, new medical treatments based on Jeff’s labs. These treatments drastically improved Jeff’s health and quality of life, leading to significant growth in cognition, abstract thinking, and independence. I cannot over-emphasize how profound Jeff’s progress was during this time – it was truly game-changing. You can read more about Jeff’s progress during those years here (9 a and b). However, it’s important to note, that I doubt any of these gains would have been possible had we abandoned any of those foundational treatments (diet, basic supplementation, detox, etc.).
Step Four: You have the Power to move things forward for your child
Yes. You have the power. There are a things to remember in this journey.
I would like for you to keep these things in mind:
1. Remember that progress is progress. Therapies and treatments rarely yield results overnight. If or when they do, recognize that it is a rare occurrence and celebrate.
2. Consistency pays off. Trust that small changes, over time, will equal big results. This is another reason why it’s important to evaluate and document progress regularly. Keep this information in one place so that it’s handy. Oftentimes, when I get discouraged, I’ll pull out these old evaluations, read through them, and discover that progress has been made!
3. Your child is an important part of the team. Tell them what is going on, share why you are working so hard alongside them and grab the face of that cute kid and tell them “I won’t give up. I believe in you. Together we can do this.” Instilling confidence in your child and treating them like a partner is one of the foundational steps I have learned that changed how I looked at the world.
Whether your child is young, a teen, or adult, there is no time like now to help them feel better and work towards their goals. You can do it. And it is never too late – I have witnessed 27-year-olds gain speech – the window of opportunity for growth never closes! The bottom line is, time will pass. Make sure every moment count towards your goal.
1) 95% of children with autism have co-occurring conditions, the average being 4.9: https://link.springer.com/article/10.1007/s10803-018-3521-1
2) TACA’s Programs and Services: https://tacanow.org/who-we-are/programs-services/
3) TACA’s website provides in-depth, comprehensive information for parents regarding the autism journey. Parents can also join TACA’s Hope and Help FaceBook Group
4) The art of managing professionals https://tacanow.org/family-resources/art-of-managing-professionals-appointments/
5) Standard labs (see 3 separate blueprints for all details) https://tacanow.org/blueprint/genetic-testing/
6) Standard tests https://tacanowblog.com/2011/09/28/percentile-this/
7) Other tools here https://tacanow.org/blueprint/evaluate-therapies-3/
8) Studies https://www.ncbi.nlm.nih.gov/pubmed/?term=autism
9) Breakthroughs for Jeff
a. Cerebral folate autoimmunity http://tacanow.org/wp-content/uploads/2013/05/Cerebral-Folate-Deficiency-ASD.pdf
b. Additional mitochondrial support https://tacanow.org/family-resources/autism-and-mitochondrial-function/