Is It Autism? 8 Things To Do Now If You’re Worried
If you’re reading this blog, there is a good chance that you’ve seen the signs and you’re wondering “Does my child have Autism?” It can be really scary. Trust me, I’ve been there. It feels like the world is imploding on you. But the truth of the matter is – whether or not your child is eventually diagnosed with Autism, there are things you need to know and do now.
Know that your world isn’t ending
I am sure right now you’re in a full panic. “Did she make eye contact?” “Was that a word?” “Can he even hear me?” No matter what you do or don’t do will not change the diagnosis. But it can improve outcomes. And no matter what the outcome is, you are going to be okay. Your world will change and it may become more challenging in different ways. Life may look different than you expected. But you and your child will be ok. I promise that.
Don’t wait for someone to tell you your child is delayed
When we first suspected Autism, no one agreed with us. Our pediatrician saw a child who was extremely social and was the third in line of three boys. She was not as worried about his delayed speech as we were, given where he fell in birth order and that his two older brothers talked non-stop. “He might just not NEED to speak because everyone else is talking for him!”. And let me be clear – I adore our pediatrician. We’ve been with her 16 years. But she was looking for what textbooks taught her what Autism looks like. But the truth is – Autism is a spectrum and looks different in every child. So many people told us Cooper couldn’t possibly be Autistic because he loved being around people so much. And in that moment, I loved that validation. It’s what my worrying mama brain wanted to hear. But it wasn’t true. I knew in my gut something was wrong and I had to forge ahead before others told me to do so.
Resist the rose colored glasses
When we finally got our referral to get a professional assessment, we had already noticed Cooper’s delays for almost 12 months. He had just turned 2, had no expressive or receptive language, was making no meaningful improvement from the one hour of therapy per week from the state, had no eye contact and stimmed nonstop by spitting into his hands and smacking them together for hours on end. But the mama in me didn’t want to be honest with myself. We were referred by our pediatrician to the Kennedy Krieger Center for Autism and Related Disorders. KKI has a two step intake process – first, a phone interview and then, an online assessment where you watched videos of two children (one with Autism and one typically developing) responding to situations and you had to gauge where your child for fall. Both of these give KKI an indication of how likely your child will be diagnosed with Autism. I have heard children who score more likely get seen sooner, but this has never been confirmed. Anyway, it takes some guts to make that phone call. Even though you now have others agreeing something is wrong, calling for the appointment somehow makes it real. And real can be terrifying. I remember trying to get up the nerve to call. As the phone rang, my brain was racing, “Am I overthinking this? What if we get an appointment and it costs a ton of money and they say he is fine? Are they going to laugh at me?”. But the simple truth is, you need to get out of your own head and be honest with yourself AND others. During the phone interview, they asked me about milestones and abilities my child had or didn’t have. And with each question, I found myself leaning towards, “Oh I think he could do that!” … even though he hadn’t. Most children with Autism do not have an intellectual disability. So while Cooper was smart enough to do that, he simply couldn’t or didn’t because of how Autism impacted him. But my optimism didn’t give our providers the right information to get him seen sooner.
Earlier is better
I have heard that every year of therapy before a child turns 4 years old is the equivalent of 10 years of therapy after. And to be brutally honest – therapy is expensive. But you need to know – insurance isn’t going to cover a thing until a professional that they deem qualified (e.g. not someone through the county, school system or your pediatrician) provides a diagnosis and treatment plan. Every day you wait is a day your child loses. I shared my concerns with our pediatrician at my child’s 1 year appointment. We agreed to monitor and discuss again in 3 months. Again, we agreed to wait and see. I didn’t quite listen and called our county’s Infants and Toddlers program afterwards. At the 18 month appointment, our pediatrician suggested we contact Infants and Toddlers – to which I told her, “Well I didn’t want to wait – so I called 3 months ago and we are still waiting for an intake which didn’t happen for another month (and then another month for services). At our 2 year wellness visit, our pediatrician referred us to KKI. They contacted us six months later and our appointment happened 10 months after our initial referral. The doctors who diagnosed Cooper recommended ABA therapy (which was remarkable for him). But again, that took 3 months to get into. So while we knew something wasn’t quite right when Cooper was 12 months old, he didn’t get his first day therapy until he was 36 months old. You cannot start the process early enough.
Get on the lists
Many states offer an Autism Waiver program, which is essentially a program that waives income limits to receive certain Medicaid benefits. Those benefits will vary state to state and again, have wait lists. In Maryland, that wait is typically 7 to 10 years and most families find out about this benefit too late to benefit from it. We are so fortunate a parent advocate in the Infants and Toddlers program told us about the Maryland Autism Waiver when Cooper was 2. The Maryland program doesn’t require a diagnosis to be added to the waitlist -but you need to have a diagnosis by the time your child comes up on the list. This little tidbit saved us a year of waiting.
Expect a hearing test
While we were waiting to to get our appointments scheduled, our pediatrician wanted to rule everything out. As with that, she referred us to Johns Hopkins Children’s Center for an evaluation of Cooper’s hearing. As expected, we found that he heard us just fine … he just didn’t react to anything he heard. If your child is nonverbal or has delayed expressive and/or receptive language, just know this process though is a normal stepping stone towards a diagnosis that many don’t mention.
Know your child’s rights
This is a big one. You may have never paid attention to laws or politics before but those days are done. You need to know what your child is entitled to and fight for it. There are several laws that give your child access to education and other services that local and state governments simply do not follow because they do not have the funds. It is often easier and cheaper for them to wait for a judge to force them to provide it because the percentage of parents who can afford to sue is significantly lower than the numbers of families who need intervention. For as kind and nice as your team may be, just remember that they will only offer up what is easy and cheap. And if your child could thrive with easy and cheap services, you wouldn’t be on this journey. When Cooper was enrolled in Infants and Toddlers, they suggested he receive one hour of in home therapy every other week, but they would be open to every week if we would like. We were delighted. An hour per week – for free!? We felt like we hit the jackpot. Every week, our therapist would arrive and every week, Cooper would fail to make progress. When Cooper was diagnosed, his doctor recommended a minimum of 20 hours per week, ideally 40. I reached out to a dear friend who is also a parent of two sons with Autism to discuss and he shared with me that the state of Maryland has guidelines on how many weekly hours should be provided to children with suspected Autism …. And those guidelines were 20 hours per week. Why on earth was my child receiving 1 hour when he was entitled to 20? Because they weren’t staffed to give 2 hours per week, let alone 20. We didn’t know and therefore didn’t ask … And Cooper paid the price.
Find a peer group
The sad reality is – you’re probably going to grow apart from or lose a lot of friends as you navigate this. Some of this will be already strained friendships ending because you don’t have the patience or time to nourish them – or the more likely is that these people won’t want to listen to your problems and they’ll tap out. It sucks but it’s true. I can’t begin to tell you the number of people who walked out of my life because my life challenges were too much for them. Remember the first time you came back from college and saw your friends who didn’t go away to school and realized you didn’t have much in common with them anymore? That’s pretty much where you will be again. It’s not easy or fun … but it’s the truth and it will be ok. Because there are so many people who DO know what your life is like. There’s a new tribe waiting for you. And the friendships and connections you’ll make with them will likely be deeper than with others in your life. A great place to find a peer group is Facebook – there are so much local parenting groups for kids with disabilities. Just a word of caution – these groups can get intense. If you find a toxic group – get out and find a better one.
The path to a diagnosis is an emotionally draining one – but it’s necessary and will set your child up to be the best possible version of themselves. Give yourself grace and let others carry you when you’re unable to do it yourself.
What tips would you add?
