I have had a number of conversations in recent weeks about our journey and the order of events. It has led to a lot of reflection about the beginning of it all and just how difficult it was to get our arms around what was happening. When I see other parents going through the early stages, especially around 2-3 years old, I know where they are. There is a lot of bad advice that comes mixed in with the good stuff, and the bad advice is not necessarily coming from someone with bad intentions. The bad advice can come from well-meaning family and friends who are trying to make you feel better, teachers who do not want to engage parents on symptoms they see, doctors and therapists that suggest a ‘give it time’ approach, and the list goes on and on. ASD is a deceptive disorder that evolves during the critical early development of the brain, and when you wait and see in any way, you have wasted valuable time to intervene and address symptoms.
When we went for our first part of our evaluation with the Angel Program, I dropped Jim off and went to a Starbucks nearby to wait until he was finished. I had a book with me called The Parent’s Autism Sourcebook by Kim Mack Rosenberg. It’s a good resource book if you are just starting to understand what ASD is and the various approaches available to therapies. Most of the book provides specific providers of those services. I got the most help from the first 40 pages and more specifically a section entitled Early Signs & Symptoms. As I have mentioned, our symptoms came on subtly and slowly, and I had looked back again and again trying to figure out what I had missed. Kim provides categories of symptoms, and when I reviewed the Communication Symptoms, we had 5 out of the 6 and had for some time. I reviewed the Social Symptoms, and while these had followed the Communication Symptoms, we had 3 of the 5 listed. Other behaviors listed, I recognized as well. I texted my husband and said, “if I read one more symptom that someone should have pointed out to us as being associated with ASD, I’m going to throw this book through the window.” I was angry because we had been asking and asking and asking for advice, help, and direction, and we just could not get it. I knew that I had to let it go and move forward, but I’ll admit it was tough.
So for parents that are in that spot right now, read, study, and learn about ASD. Also recognize that there is no playbook for lining up evaluations, therapies, and options for school. You are going to get a lot of input that you have to process and decide what is best for your child. If you have even the slightest concern, consult your pediatrician for a referral to a group that can help. If the wait time is too long, hop on the list and pursue an evaluation with a provider that is relevant to your concerns, which will normally have a much shorter wait time – sensory seeking behavior (OT), social (ABA), language/communication (Speech/Language). And please, please, please, do NOT be scared of the label. It’s more important for you to know exactly what you are fighting than what it’s called. Also recognize that if ASD is in fact your correct diagnosis, that it can impact the insurance coverage for therapies.
Keep in mind that ASD is like a chameleon: it changes with different environments. You may not recognize that a meltdown at a birthday party could have been the large number of people (social), the loud noises at the tiny birthday room at the bowling center or skating rink (auditory sensitivities), and the demand of a large group of people trying to interact with your child (language/social). You may not be up the curve yet on recognizing when your child is overtaxed, and you need to punch out of the activity and head home to a quiet space to avoid a meltdown. You may not see other difficulties emerge until they are in a school setting where some structure is introduced into their day. You can only keep their environment contained for so long before they have to enter into a more diverse social and environmental existence. When they do, you may see symptoms pop up out of nowhere – like a switch.
Speaking of pop up symptoms, it’s worth mentioning that battling ASD is like a game of whack-a-mole. You will find yourself addressing one symptom and making progress only to wake up one day and find two other issues that were not there the day before. Old symptoms love to make comebacks. This can be especially frustrating when your child is working hard to overcome something, and the progress unlocks more challenges. Don’t get me wrong; progress is ALWAYS good, but it can be a double-edged sword. As a protective mama bear, I get frustrated for my boy. The good news is that over time you feel a bit more equipped to help your child. The longer you are at it the better you are at recognizing symptoms and understanding your child, and as a result, your relationship becomes stronger.
One thing that should never get lost in all of the challenges presented to parents navigating the spectrum is the wonderful gifts possessed by their kids. I have not met one child on the spectrum that does not have multiple awesome gifts. I know this is true about all kids – they all have gifts to give this world. But kids on the spectrum tend to have symptoms that can mask or hide those gifts. For example, while a lot of kids with ASD have trouble understanding emotions, I have met many who are really funny and love to be silly and tell jokes. I have my very own resident comedian! The subtle nuances between angry, frustrated, and irritated or sad, hurt (feelings), and disappointed can be difficult for kids on the spectrum to parse out. Many kids with ASD can have cognitive difficulties that can make recalling information difficult, which makes learning a slower (not impossible) process. It may take a few tries, but once it clicks, it’s in there. Other learning activities are super easy, especially more concrete, less abstract concepts. The point here is that many kids on the spectrum are wicked smart; they just have a different way of learning.
There’s a reason they call it a roller coaster ride – there are a whole lot of ups and downs. A breakthrough can make you feel like you have had the best day ever, and a setback can be like a punch in the gut. But there is no question at all that they are worth every step to progress.
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