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1) The first lesson is that your autism journey is almost certainly going to be a marathon, not a sprint. It’s also not going to be a straight marathon. It’s more like a marathon on a rollercoaster. You could be feeling like things are going great, and then, suddenly, something happens. As you know, life continues to go on so as you are putting things in place to help your child get better, other events like deaths, job losses, financial struggles and divorces sometimes also happen which may affect your child more-so than other family members. Even if these external events don’t happen, there is a pretty good chance that your child may develop a new medical problem in addition to autism, like when Lucas developed motor tics at the age of 6 or when he started exhibiting self-injurious behavior and aggression related to pain when he was a teen (I talk about Lucas’ medical issues and diagnoses in my Importance of Ruling out Medical Issues video blog).
2) Medical Issues such as diarrhea or constipation, severe sleep and feeding issues, seizures, motor tics and any kind of pain are not a part of autism. I believe that Lucas and most of the kids I know with autism have other medical issues that need thorough evaluations and treatment. Don’t let medical or behavioral professionals make you believe that these problems can be chalked up to autism alone.
3) Whether your child is 2, 12, or 20, the best way I know of to keep track of progress as well as to keep data on medical issues, complications, and setbacks is this: Buy a dedicated calendar for you to write down when new therapies, medications, supplements or even when vitamins are started. One time when Lucas was young, he had severe problem behavior because of a multi-vitamin I started giving him which contained copper, which he and many kids with autism cannot process well. You can also keep track of sleep, the success of community outings and problem behaviors at the same time. I’ve kept a calendar like this every year for over 6 years and this data helped us figure out how to get Lucas’ major problem behaviors to 0 through a combination ABA therapy plus medications for his autonomic nervous system issues and allergies.
4) Recovery from autism is possible, especially for children who are mildly affected and start treatment before 30 months of age and ABA almost always leads to dramatic gains, even for older children. Just because Lucas didn’t recover from autism, doesn’t mean your child won’t. And, the great news is that even when children don’t recover, ABA can still make a huge difference, especially with very young children but even when ABA is started with older children, teens, or even adults.
5) Make sure you put the oxygen mask on yourself first. As you advocate for better medical and behavioral care for your child, you really must take care of yourself. You only have one life to live so you need to learn to enjoy it, even as you are tackling autism head on. Autism has been huge life-changer for me, but I’ve always managed to continue striving to reach my goals and to learn everything I could to help my son, and then eventually, I started helping a lot more people.