Perhaps you are the parent of a child who has been newly diagnosed with autism or you see the red flags and suspect the diagnosis. I have walked in your shoes. I have been where you’re at right now. And, I know it is overwhelming. There is so much to process and so many fears run through your head. But, I write this blog post especially for you. I have really good news….and then….some really not so good news. Which would you like to hear first? I’m kind of a “give me the good news first” kind of gal, so let’s start there.
The good news is that if you are seeking help for your child early (under the age of 5, but even better under the age of 3), there is so much hope for them. Even if your child is older, there is still hope. Children on the spectrum CAN be helped tremendously with the right intervention and programs. In those early days when I was still reeling from hearing that word “autism” spoken in the same sentence as my son, I frantically searched the Internet for any prognosis statistics I could find. I knew through the grapevine and in the news that early intervention was a huge thing. So, I was desperate to get started as soon as possible. I needed the Internet to tell me my child was going to be ok. I needed to hear all those wonderful success stories. But, the Internet sure knocked the wind out of my sails. I discovered nothing but doom and gloom (besides the occasional sales person trying to claim their miracle protocol would magically cure my child of autism within seven days.) And, let me just tell you, if you want to be thoroughly depressed, go hang out on some of those autism advocacy organizations’ websites for a while and their statistics will sober you up in a hurry.
However, I am grateful that I didn’t give up on my search for encouraging information. I had a friend whose daughter had been diagnosed at 18 months and I vaguely remembered the hours of intervention they underwent in her early years. I saw that her daughter at that time (aged 10) was flourishing and showing no symptoms of autism whatsoever. So, I knew that early intervention worked and there had to be hope for my son. I finally found my pot of gold in the form of a book titled “Overcoming Autism” by Lynn Koegel and Claire Lazebnek. This book provided the answers I’d been craving. According to their statistics, with the right help, at least 20 percent of kids with ASD will lose their diagnosis completely and almost half will be close to their typical peers with only minor areas that show symptoms of autism. And ALL will have major areas of improvement.
At the time, our 2 year-old son (only a few months shy of three) was very delayed in language. He was able to say a few words, but unable to form sentences like his peers. Therefore, I was concerned the most about his communication. Speech therapy became our number one priority. Imagine my relief when I stumbled upon even more encouraging statistics in the book: 95% of children with ASD who are nonverbal will learn to communicate verbally if they recieve the appropriate intervention before the age of three. Between the ages of 3-5, the chances of becoming verbal are still between 85-90%. Wow! This was the motivation I needed. I reread and digested those words again and it was in that moment, with tears of hope streaming down my cheeks, that I determined our son was going to be one of those statistics of success.
I hit the ground running. I read every book and resource I could get my hands on, fired the providers who were not aggressive enough, and sought out as much therapy as we could afford. There was so much to learn and it felt like a race against the clock to get it all right. I insisted on sitting in every therapy session so that I could imitate the techniques we learned there consistently at home. Every waking moment, I was focused on intervention. I recall when they told us that the amount of time recommended in therapy at that age was 25-40 hours per week, I was not even phased. Whatever it took. In fact, when I started sharing our news with a few others, one friend’s comment to me stood out: “Be prepared to work your butt off for the next couple of years.” Surprisingly, her comment was more comforting to me than most of the comments I received. I think it was because she reinforced that there was something I could actually do. I could take action and stand a chance that I could influence our son’s prognosis.
Not many disabilities offer that kind of hope for recovery. (And, by “recovery,” I mean that your child can learn to function with ASD more like their neurotypical peers, NOT that I’m saying they will no longer have it. It is a lifelong condition with no known cure). With autism, the prognosis is so variable. I’m sure by now you’ve heard that saying “if you’ve met one child with autism, you’ve met one child with autism.” It’s true. The spectrum is so wide, every case is so different. So, there are no guarantees and nobody can predict how the future will look. But, there is enough evidence to suggest that early intervention is very powerful and effective.
So, now are you ready for the not so good news? Here is what they DON’T tell you about early intervention…..it’s not just for the “early”. Sigh. I had it in my head that age five was a magic “make it or break it” number. That once we cleared that hurdle, we could start breathing easy again. My friend was right when she warned me about working my butt off for those next couple of years. I worked my ever loving ASS off! But, here we are now, and our son is seven. And, guess what? I’m STILL working my ass off.
Early intervention worked for our son, no doubt. When we first began our journey, he was assessed as being more severe or the same level as 82% of other kids his age with ASD. (Another words, on a scale of 1-100 of ASD severity, he would score an 82.) I was devastated when I read the report (which happened to arrive on the day of his 3rd birthday party. Talk about a crappy day to read that news!) But, four years later, he is high-functioning, mainstreamed in his first grade classroom, he has friends, is reading, conversing, and enjoying life just as fully as his typical peers. There were even times when he was misdiagnosed because he so closely mirrored neurotypical behavior, he didn’t qualify for the diagnosis. If that isn’t a testimony to early intervention, I don’t know what is! To encourage you even further, we even missed the crucial first-level “early intervention” window (under the age of 3). By the time we truly started in therapy after all the months of testing/evaluations, sorting through doctor referrals, waiting lists, insurance bureaucracy and just really bad advice (I will save that rant for another blog post), he was a month shy of three years old. I often wonder how things would look now if we had started at 18-months-old. But, I try not to live in the mom guilt land of “what if’s”.
Disclaimer: Please understand that every child is different and you are not guaranteed the same results as my child or other parent’s testimonies. I simply share my story from a mother’s point of view to offer you hope. At the same time, I recognize that there are some who will undergo rigorous therapy who may not achieve the prognosis they desire. I wish I had more to offer those of you who may find yourself in this category.
The road to “recovery” holds so much potential. But along with that is the weight that ASD parents often carry along that road. When you believe that you hold the key to your child’s success, you take on an enormous amount of pressure. You feel guilty every moment that is not focused on “autism”. No matter how much you are doing, you feel like it is never enough. You start to question yourself when you fire the quack therapists that claim their program is the ONLY one that will work and “the way, the truth and the life” (another topic I’ll save for a separate blog post). You question if you should cash in your retirement to pay for that additional $10k worth of therapy that may or may not work. You question if you should try this diet or that supplement. Every decision weighs heavily on you and feels so crucial at the time.
When you don’t see the progress you think you should, you blame yourself and wonder if you could have done more. But, just like with everything else, progress doesn’t happen overnight. You can spend months trying to teach one skill only to see minimal gains. At times, it feels like how my diets often go down: I will work so hard on a program for weeks and feel like I am literally going to starve, only to step on the scale and find out I’ve lost half a measly pound! It is frustrating and disappointing when you work so hard but the results are so incremental. Then, there are times you think you’ve nailed a skill set, only to see your child regress when they hit a developmental growth period. All of this guilt, doubt and frustration coupled with trying to balance other things in your life that may have shifted to the bottom of your priority list, like other siblings, your marriage, your friends, your finances, and maybe even a job or career. Trying to balance all the little saucers in two hands feels like they will all come crashing down at any moment. It is so much for one person to juggle.
So, this is why I urge you to start crafting your coping skills NOW. Don’t make my mistake and think you’ll be okay if you can just make it to age five before you start addressing your self-care. Yes, “early” intervention is crucial. These are the MOST important years while the brain is still developing. But, be prepared that intervention may not stop just because your child starts kindergarten.
Our son has made tremendous strides, and for that, I can’t begin to express my gratitude. I try to remind myself daily how far we’ve come over four years. But, he also has a long way to go. The demands of school only increase as he gets older, and he doesn’t always keep pace with them. We have to focus daily on maintaining his progress, which often requires 5 times more effort than his peers. His language has obviously improved since he was three, but he is still very delayed for his age, which effects every other area in his life. He makes friends and loves people, but his social/language skills do not always keep those friends quite as easily. He still toe-walks 99% of the time, which has led to ankle problems and decreased range in his flexibility. I could name a whole host of other areas we are currently targeting. But, I share all of this to make a point that you can’t wait until you think your child is “recovered” to start living your life again.
I still carry the mom guilt each and every day. For example, we rely way too heavily on screen time to get things done, and it haunts me at night when I try to sleep. I constantly run scenarios and different behavior approaches in my head, trying to figure out how to motivate him to give up his kindle. Every moment I sit and relax on the couch is time I feel I should be reading to him, catching him up on his academics and language. Every moment I spend sipping my coffee, I feel guilty for not playing that board game his speech therapist sent home for extra practice. Each extra moment I spend enjoying my hot shower is time I should be working with his PT foot stretching exercises or his OT core stretches. There are just so many things to teach and so little time to teach them. (Not to mention, I have another child with a disability to manage, as well.)
As you see, the race against the clock may not end after those prime early years. Now, if you are a little irritated at me for raining on your parade, I can at least offer you some tips on how I personally cope with it. Here is how I confront and manage the never-ending cycle of “autism intervention” and hold on to a shred of sanity in my life:
- Set reasonable goals for your child and break them into manageable pieces. Sometimes, this may require focusing on just one skill at a time.
- Build “intervention time” into your daily routine. For example, we have a set time before bed every night when we work on PT stretches and reading. This way, I make sure we’re working on them consistently instead of it nagging at me throughout the day.
- It is OKAY to ask for help. This is a big one! If you don’t have a family member who can help you, hire a nanny or college student who you can train to work with your child while you accomplish your to-do list. I can tell you without a doubt, I would NEVER have made it without the help of my parents and the sweet grad student that often visited our home to help me.
- Take each day at a time. Don’t get overwhelmed by the whole staircase. Sometimes, all you can do is focus on the next step.
- Schedule in time on your calendar for “self-care” the same way you would your child’s ABA or OT appointment. We will always put our kids before ourselves. But, you can’t keep going forever. It is best for your kids if you are at YOUR best. I literally set up “ME” appointments on my calendar so that it forces me to take that time for myself.
- Celebrate the milestones and remind yourself OFTEN of how much progress you’ve made. Hang on to those list of goals and deficits so you can compare the progress months or even years later. When I was refiling all my son’s old paperwork the other day, I came across my very first list of goals I ever made for him. It blew me away. I cried ridiculously long pathetic happy crocodile tears! I pray the same for you one day when you look back on your first list.
It will be a long, hard road, I’m not going to lie. But, it is a road that does not have to consume you. The first piece of advice I received at the beginning of our journey was from my friend with the 18-month-old. She encouraged me to cherish that time I spent with him. She recalled how 40 hours of therapy seemed quite daunting at first, but when she realized that the time with her daughter was time she would never get back, her perspective changed. I will pass on the same advice to you. These teachable moments with your child are precious. Applaud yourself. There is probably no person on this planet who will fight as hard for your child as you (besides, perhaps, your spouse or the other parent). You have been called for such a time as this. And, those He calls, He equips.
“For it is God who works in you to will and to act in order to fulfill his good purpose.” -Philippians 2:13
Disclaimer: The content on this blog is not intended to serve as a treatment plan for ASD. The author is not licensed in mental health or other speech/occupational practices. The author can not guarantee that others will experience similar results or prognoses when applying intervention practices discussed on this post. Please consult a licensed clinician for guidance on the appropriate intervention methods for your child.