April is Autism Awareness Month, and I looked at the calendar and realized that if I did not hurry up with a post, I was going to miss it! The last few weeks have been filled with a lot of great conversations with friends, parents and therapists that have reminded me that this journey and the triumphs and struggles that go with it are shared by many children and families. There is a comfort in knowing that you are not alone and that there is support not just among autism parents but typical parents as well. The one word that has dominated my thoughts as I contemplated this post was Awareness. That word, in the context of Autism Awareness Month, brings an obvious connotation of seeking to bring to light for as many people as possible a greater understanding of autism and how it can affect children and their families. And yet, awareness permeates so much more within the autism community. After all, awareness of the world around them and the ability to connect to it appropriately is exactly what autism seeks to take from these kids and adults who are afflicted by it.
Early intervention is all about seeking to reverse that disconnect (and in some cases, hyper-connection) within the brain so that the child can operate in their various environments. Parents are first challenged to understand the problem, and that problem is a unique array of issues that are often a completely foreign language to parents. Suddenly you are taking a crash course into the world of autism and all the various symptoms, therapies, approaches, and treatments available. Even more daunting is the fact that there really is no playbook. The appropriate direction for your child is unique and changes as you go along. You would be surprised at how many providers are reluctant to arrive at an autism diagnosis no matter how clear the case may be based on symptoms presented. In our experience, no matter how many times we asked the question, it seemed as though no one wanted to be the one to formally say it. As crushing as it can be to hear the word autism associated with your child, it is a relief to finally have an answer and to then develop a game plan to then help them.
The awareness I see that is most needed and frankly, critical, in directing parents towards early intervention is among the group of folks on the front lines of working with young children every single day – teachers. I have often heard teachers and administrators say that they do not feel comfortable in saying something to parents when they see something of concern with a child. Their reason is usually that they are not allowed to diagnose. I would offer this parental input though. I do not expect teachers to diagnose children as clearly that falls within a different realm of medical expertise, but I think that all teachers should be armed with a basic knowledge of Autism Spectrum Disorder (and ADHD) and be able to identify and communicate those warning signs to parents to prompt them to pursue additional evaluations. Just as a teacher would raise a hand if they see difficulty with fine motor skills, math or reading, they should be able to identify things like speech delay, focus and attention issues, gross motor control, stimming behaviors, and echolalia (scripting). Bringing those issues to the attention of a parent can be critical in the parent pursuing additional evaluations and beginning early intervention therapies. In the world of autism, 3-6 months is crucial time, and the ‘wait and see’ approach can do a lot more harm than good.
Whether it’s a formal seminar or simply doing a little light reading, being armed with the knowledge makes a teacher more effective and able to pass along this vital information to parents and could make the difference between whether the child gets the help needed or simply struggles until the situation deteriorates to a critical point. Remember that autism symptoms vary with environment, and what you see in the classroom may not be happening at home. Teacher input is so very important, and it should not be presumed that the parent knows about certain tendencies or behaviors because the child’s behavior is often very different within the predictable and familiar home environment. Without the input and direction from one teacher, we may have been slower to start speech therapy for Jim, and I have no doubt that our story would be very different had we not acted as early as we did. If you are a teacher and reading this, please take the time to learn as you could be integral in getting a child the help they need. For school administrators, if you are not arming your teachers with a protocol for communicating their concerns, you are effectively abandoning these students. Any institution involved in early education will likely have an autistic child come along at some point (the CDC just updated the number to 1 in 59 children from 1 in 68). If the game plan is just to deflect until they go away, you are failing these kids and their families.
I did not know that I would come to appreciate awareness as much as I do today when we started down this road, but we have continued to make strides with every passing month. We started all this in speech therapy and took a break from speech when we enrolled with the Angel Program. We circled back to speech therapy again not long ago not to work on speech but more to focus on language. For many children on the spectrum, the abstract or less concrete concepts are more difficult for them to ascertain. Language is full of inferences, implications and the less concrete. It can be difficult for kids to know the right words to say to convey a particular feeling or to say what they really mean. What’s more, they never know what the other person will say in reply, and that can be confusing. For example, on a number of occasions when I have had to tell Jim ‘no’ or to stop doing something, he gets very frustrated and will say “I hate you Mommy!” This is immediately followed by a confused expression as if he knows he didn’t mean that, and it will be followed by “I love you Mommy, I love you.” I always answer the same way. “I know Jim, but buddy we can’t do what you were doing…” I try to explain the why and try to give him better phrases to use in response to that kind of situation. It’s painstaking, but we have made progress. So much of where we are is about giving him the tools to be able to function more smoothly in whatever environment whether it is home, school, church, etc. There is a lot more to that than meets the eye, but big picture, I feel like we are getting the upper hand on autism. The hard part is maintaining that upper hand as he gets older and more aware while the world around him becomes more complex and intricate.
One thing is clear; autism kids and their families need those around them to lend their support. It makes a big difference not only for the child, but for the parents trying to navigate a really difficult, ever-changing journey. You will probably never know what a difference you make to a kid just by giving a wave and giving them an opportunity to wave back, or giving a smile instead of a grimace when they are being a little more active than other kids. You may not realize the subtle impact you have when you show understanding when they are just not feeling up to being particularly social on occasion, or show extra patience when they do not have the right words in a conversation. When Jim was a toddler, my husband used to say, “Give me a big hug Jim!” Jim would back into him because a real hug was not his favorite at all. Over time, he would give a very brief half hug, and eventually, he would throw both arms around my husband’s shoulders and give a big squeeze with my husband giving step by step instructions. He literally taught him how to give a big hug. Whether it’s hugs or language, it’s about reaching them, and enabling them to reach back out to the world. I encourage everyone that has a child with autism in their life and community to learn about ASD and help these kids and their families in any way you can. Your awareness will spread to others, and it will help these kids grow into adults living in a more understanding and aware world.
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