Ed. Note: This post was written in 2014 and shared via social media, before I started this blog. I wanted to re-share it here so that I could link to it from future posts.

April 3, 2014

It’s late, and today was crazy-as-usual, so this is my first opportunity to sit down and get this out. But I’ve decided. It’s time. I can be silent or vague no longer…

The Munchkin is autistic. I am an autism mom.

Some of you knew this. Some of you may not have. It took us 7 years to get a diagnosis. And then when we got it… when a licensed healthcare professional finally looked me in the eye and said, “You are not crazy, I can put a name to all of these things, I can make this make sense”… I was relieved.

But I was also lost. I didn’t know how to explain. I didn’t know how to deal. I didn’t know how to get help. I thought he was so high-functioning that maybe he didn’t need extra services, and that overcoming his sensory challenges was up to me and him to figure out. I thought people would label him – I was afraid they would hear the word “autism” and assume the worst… or that they would meet Munchkin, hear him talking and interacting normally, and think that I was crazy.

But things are changing. I feel compelled to share, for a variety of reasons. I wrote a letter to the other families at our school, and I sent it to our teacher, asking for her to determine with the principal if it was appropriate to share. I don’t know if they’re going to pass it along. But I hope they will. I hope this is a first step in changing perceptions. I know that I have learned a great deal in the two years since diagnosis, and I’m still learning.

The text of my letter is below. Please feel free to share this… not to make me look good – I’m just a mom doing the best she can – but to further educate people that autistics like my Munchkin can come in many different packages, even if they seem “normal”.

~Elle

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Dear Fellow Parents, 

In our busy modern lives, it is sometimes such a challenge for us as parents to be able to connect with all of the people in our children’s lives to the extent that we wish we could. Even though we have been a [our school name] family for 5 years now, I realize that I still have been unable to meet many of you, or share in this adventure of parenting. I hope you will indulge me for a few moments as I share with you something very close to my heart. 

We all know that our kids love to share stories with and about their friends. But we also know that sometimes things happen with children that can be difficult. My son R. is no exception to this. He loves to tell me about his friends, but he also sometimes comes home with questions about why a person may have said something or acted a certain way. I am certain that all of your children are the same way. As involved parents, we try to teach our children that curiosity is a good thing and questions from eager young minds are to be welcomed and encouraged. This is, after all, how they learn to understand the world around them. 

Many of your children have been in the same classroom with R. before. When they were younger, certain behaviors or actions may have seemed like a less serious infraction, as small children are still learning boundaries, self-control, and appropriate socialization. But what happens when those children get older, and some of them struggle to “outgrow” some of those behaviors that can sometimes be hurtful even to the best of friends? 

It has recently come to my attention that there may be some concerns that R. has been getting “special treatment”, or perhaps not dealt with appropriately in instances where he has acted out in some way. I am sure that this may seem strange, especially given that he is one of the older students in his grade. In light of [our school]’s strict anti-bullying policy, it may have appeared to some that R. has received special consideration, as there is nothing immediately obvious about R. that identifies him as a “special needs” kid. 

Up until now, we have been somewhat guarded about sharing our truth with other families at school, for fear of R. being “labeled”. As a parent, you hear the horror stories about children being “labeled” at school, and you do everything you can to assure that never happens to your child. But I see now that, as R. gets older and his differences become more noticeable, it is more important to educate others than to shelter my child. [Our principal] has done a remarkable job of fostering a school community that is welcoming and supportive of all types of learners at all different levels. So it is in this spirit that I want to share with you our journey and our truth: my bright, caring, energetic son has autism. 

R. has what’s known as “atypical autism”. This is a great deal different from the sorts of caricatures one might see in pop culture… characters like Charlie Babbitt in “Rain Man” or Eric Gibb  in “The Boy Who Could Fly”; these characters represent a severe form of typical or “classical autism” that is often associated with extreme intelligence and anti-social or even non-verbal traits. But what is commonly called autism is a generic term for “autism spectrum disorder” (or, ASD), a complex disorder of brain development. Calling autism a spectrum disorder is to identify that there is a wide range of difficulties, challenges, and severities associated with these conditions. Simply put, each individual on the spectrum is unique, and their autistic traits manifest in different ways. 

We only received R.’s “official” diagnosis of “pervasive development disorder-not otherwise specified” (PDD-NOS, or “subthreshold autism”, meaning someone who has some but not all the characteristics of autism) in mid-2012. Even though we knew early on that something about R. was special, most of his symptoms were subtle or erratic. Because of this, and because of some challenging life circumstances during his 3rd through 7th years, it took a long time for us to get connected with the right specialists and finally give those differences a name. The great thing about being able to name R.’s challenges is that it opens doors for us to find more and better ways to help him overcome obstacles and learn to be independent and successful. 

As any of you who have interacted with R. probably know, he is verbal, intellectually on-par with his peers, and high-functioning – on the surface, he probably seems “normal” (the technical term, in this case, is “neurotypical”), which is why he remains in a regular classroom. A great deal of his symptoms have manifested in sensory processing challenges and appropriate social development. I know that there have been some instances in which R. made a poor choice in his interactions with his friends, your children. I want you to know that as a parent, I take these types of issues very seriously. I am not asking, nor would I ever ask, for R. to be “given a free pass” – there are consequences to his actions, and he must learn how to overcome challenges like sensory overload and immature emotional expression so that he can maintain his social relationships. We are working with a team of doctors and therapists to help R. in areas of social integration, sensory processing, motor control, and several other key aspects. While I never want R. to use his diagnosis as a crutch or an excuse, I also do pray for some understanding that his learning curve is longer. Integrating new concepts takes him a lot more time and practice, and he often needs cues and reminders. Sometimes the basic sights and sounds of everyday living that neurotypical people like you and me never even notice – devices buzzing, people talking, cars driving by, lights flashing, splashes of color – can be completely overwhelming to any person (child or adult!) that struggles with a spectrum disorder. 

So why now? Why am I “coming out” to you now as an ASD mom, after two years of relative silence? 

Last week, the US Centers for Disease Control and Prevention published a new report on the incidence of autism spectrum disorders in American children. As of 2013, the national average for an ASD diagnosis has risen to 1 in 68. This average is even higher for boys, where the rate is 1 in 42. Autism affects people from every ethnicity and every walk of life. While its cause is still unknown, what we do know is that autism is not contagious, it does not dictate intelligence, and it can play a key role in a child’s social and emotional development. Publication of this new report happens to coincide with the month of April, which marks World Autism Awareness month. As our knowledge of these disorders increases, it is imperative that we learn to understand why and how people on the spectrum are different, and how to interact appropriately. Just as we, as parents, seek to teach our children acceptance and understanding of physically obvious developmental differences in other people, it weighs on my heart as a mother to share my new-found knowledge with all of you. With an incidence rate of 1 in every 68 people, the odds are that R. is just the first autistic peer that your children will interact with throughout the course of their entire lives. We have the distinct honor and responsibility of teaching the next generation about acceptance and compassion, about embracing a wide diversity of people as our world grows ever smaller. 

I cannot begin to express how grateful I am every single day that we have a resource like [our school] right here in our community. I am certain that if it were not for the understanding and constant encouragement of amazing teachers and educators like [our principal] and her team, R. would not have come as far as he has. But we still have a long way to go, and it is a very humbling experience for me to know that so many families out there don’t have the opportunities that we are afforded. 

During the 2nd Grade Biography project that Ms. [teacher’s name]’s class is currently working on, R. will be learning about Dr. Temple Grandin, an accomplished scientist and author who is herself autistic, and will be sharing what he learns with his fellow students. Going forward, I would like to ask each of you to join me in educating our kids about autism. It’s such a difficult concept – even R. doesn’t really “get it”, and it’s something we live with and talk about all the time. So, while I still fear my child being “labeled”, I have come to realize that my natural desire to protect my child is secondary to being an ambassador for my child and the community of differently-abled people he represents. It has become expected in our society to not talk about things that are different or misunderstood. If I don’t lead by example, then who else is going to shine a light on this oft-misunderstood but rapidly growing population? It is my sincere hope that our journey with R. through “what looks like normal” will be a genuine and realized opportunity to teach all of our children about being successful peers with people who think or act or speak (or don’t speak) in ways that are different than what they normally see. 

I am truly grateful for your time in reading this, for your understanding of the challenges that all children face as they learn social interactions, and for your open-mindedness. We are so thankful that R. has the opportunities that [our school] offers, and that he is blessed with so many bright, sweet, fun friends. I am including some links below for further information, but please feel welcome and encouraged to reach out to me if you have any questions. I am still new to this journey, but I am absolutely certain that we can all learn together and have a positive impact on our kids and our community. I hope you’ll join me in celebrating and promoting World Autism Awareness month, this month and always. 

“Different, not less.” 

Sincerely,

~L  

Resources:

CNN Article: Autism rates now 1 in 68 U.S. Children

Autism Speaks.org: “What is Autism?: PDD-NOS”

TED.com: Temple Grandin: “The world needs all kinds of minds”

Autism Society of America: Bridges 4 Kids – “Growing Up Together” (A booklet on friends with autism)