Once, Twice, Three Times Autistic (Our journey to an Autism Diagnosis and home-led therapy)
Looking Back
“If I could only give her a script for every situation, I know she’d do fine,” I told the therapist, as we sat on the floor of my living room with a two-year-old Emmy,* “She remembers everything. She makes connections between everything. It’s just that books are her language. That’s why I try to read her everything I can, so she can have more to pull from.”
This was four years before I learned what gestalt language processing was. Three years before the pandemic and forced homeschooling. And still six months before Emmy’s first official diagnosis. I had a two year old and a three month old, a new business, new debt, and abhorrent health insurance. Now, years later, I have time to research all of the things I didn’t even know I should be researching then, which is why this is the time I’m sharing our diagnosis and treatment story.
At the time of this writing, my kids are older, the business is more secure. The insurance is still abhorrent but we can swing the difference easier. In short, I have more bandwidth. Of course I think, from time to time, that if I could go back and do it differently I would. But the truth of the matter is there wasn’t a lot of room for different at the time. My hope in sharing this detailed overview is that it might save others some time in getting to the right answers, especially if they are as cash- and time- and energy-strapped as I was back then.
Early Signs
So let’s back way up. Way, way, up, in fact, to when Emmy was a baby. Had she been my second and not my first, I would have known before her third month that she was Autistic. A funny thing about Autistic babies — they are often more advanced than their neurotypical counterparts in those early weeks. Emmy fit that to a T. She came out of the womb a practiced thumb sucker, and as such, an excellent self-soother. She was lifting her head strongly and independently, looking around intently by six weeks old. She smiled at me and my mom a lot, but she also smiled at one particular vent in my bedroom, a lot, too.
One of my proudest early mom moments came when she was just ten weeks old. I was reading her Goodnight Moon, part of our already established bedtime routine. (Unlike many Autistic individuals, Emmy has always been an excellent sleeper.) She stopped nursing completely, turned her whole head towards the book, and started smiling and cooing. I started pointing at things. “There’s the moon in the window…there’s the bunny in the bed…” she followed my finger with her eyes and looked like the absolute picture of contentment and joy.
By five months old she was sitting independently, intently watching everything around her. By one year old she could turn delicate pages of a magazine by herself. By sixteen months she knew not only her alphabet song, but all the upper and lower case letters independent of each other, and could count forwards and backwards from twenty.
What she was not doing…not really doing…was talking. She knew every animal sound there was and had a few scripts she would respond to, as most babies do. (Think, “how big is Emmy?” “So big!”) But when she was with other children her age, such as the little boy down the street only a few weeks younger than her, I could tell her communication — and more precisely, her comprehension — wasn’t like that of her peers.
She also wasn’t connecting with my husband, my dad…really anyone other than my mom and myself. Mostly she just ignored other people, especially other kids. When new people tried to intrude upon her world she got upset and annoyed. So at her 24-month well-child check-up, I mentioned it to her pediatrician.
Early Intervention
“Well, she makes good eye contact…” the pediatrician said, as Emmy glared at him, “…and she does have well over 100 words, even if they aren’t the typical words. But we can refer her to a specialist to get her evaluated. And if you’re worried about a speech delay we can pass her information along to early intervention services, there’s no need to wait for a diagnosis.”
Little did I know how lucky I was at the time. First, in having a doctor who agreed with me in seeing a specialist as soon as possible, even if Emmy didn’t present the “typical” autism markers of completely non-speaking and no eye contact. So many, many doctors are of a “wait and see’’ mindset, which, combined with the already long wait times to even get that first appointment with a specialist, leads to a lot of kids not having access to services for heartbreaking amounts of time.
Second, I was very lucky in the fact that our state has mandated early intervention services for children under three. This is not true of all states. So while we made an appointment with the local college’s Developmental Pediatrics for eight months out (their earliest available), we were able to start seeing a speech and occupational therapist once a week until that appointment and beyond.
Here, I would like to pause and tell you the one thing I wish I had done differently, and that is take occupational therapy more seriously. Emmy’s delicate fine motor skills at such a young age masked the fact that she had very poor hand strength. This is something we are still struggling with five years later. Had I known just how much hand strength is something that can be trained, and how much it affects, I would have done a lot more a lot sooner. Emmy spent five years holding her writing utensils in a fist grip. At eight months this control was impressive, but it never progressed to a pincer grip. And now, even though she finally has the hand strength to sustain a pincer grip, we are fighting against five years of habit, and that is a hard habit to break.
Why bother breaking it? you might ask. If she’s writing, she’s writing, right? My thoughts at first, too. But I’ve since learned she is using the larger muscle groups of her arm and shoulder to write so she fatigues faster. That makes things like homework harder now, and even small tasks like writing out a to-do list harder later. Also, if you spend years and years writing incorrectly, using the muscle groups not intended for that sort of motion, it can lead to repetitive stress injuries, posture trouble, headaches and backaches. So yes, something as little as a pincer grip vs. a fist grip does make a huge difference. I knew that a pincer grip was the goal, but I didn’t understand until last year why it was the goal. This whole aside is just a reminder to those going through any sort of therapy journey to keep asking why, until you understand the largest of the larger concepts, because then you can start applying them more broadly and also seeing how they fit into daily and functional life.
Our First (of Three) Autism Diagnoses
February eighth, 2018 we went to our first Developmental Pediatric appointment. Emmy engaged rather well with the nurse practitioner that we saw. At the end of our session, the NP explained that she was giving Emmy an Autism diagnosis based on the DSM-5 Criteria. The DSM-5 is in part a diagnostic manual from the American Psychiatric Association that relies on patient/parent interviews and clinical observation. I didn’t know it at the time, but this is just one of the ways you can evaluate for Autism. In fact, Emmy has been diagnosed with Autism three times. But more on those later diagnoses in a bit.
The NP calmly showed me her chart. There were some bright parts. Emmy was scoring at age appropriate levels for gross motor skills, problem solving skills, and close to age appropriate levels for expressive language skills. Her fine motor skills were weak, but not concerningly so. Again, here is an instance where her delicate control masked the growing weakness in her hands. But her self help skills were a solid two years behind where they should be, along with her social-emotional skills. Most heart-breakingly, her receptive language skills — how well she understands what is being said to her — were only around that of a six- to eight- month old. She was 32.5 months old at the time.
I was calm in the nurse’s office and made it through the rest of the appointment just fine. I was waiting for this diagnosis, honestly. I just didn’t see what else it could have been. We had ruled out hearing loss, there were no signs of any sort of physical distress that might be causing her behavior. At the end of the appointment, I calmly collected Emmy and checked out, holding her on my hip as we walked through the parking garage back to the car. I got her settled into her carseat with a snack and pulled out my phone to call my husband and let him know how it had gone.
The damn thing was at 1%. It had been at 58% when I went into the office. But it was old, and screwy, the Children’s Hospital was a thick fortress of concrete, and the phone must have struggled for two hours to keep a signal, depleting the aging battery. That is when I lost it. Huge heaving sobs in the front seat of the car, because I felt so, so alone at that moment. I couldn’t call anyone to share my burden. I felt guilty for crying in front of my daughter, worried I might be scaring her, then wondered if she even registered that I was upset, given her recent low score on receptive language. And that made me cry even harder.
2018 and 2019
In a way, I guess being too busy to dwell on something was a blessing. Emmy’s diagnosis was just one thread in a tapestry of an insanely busy life. We had just moved over two hours away from our previous home two weeks before Emmy’s appointment. I had driven back to make it when I found out none of the now-closer hospitals had any sooner appointments. We were still in the throes of setting up the new house. On top of that, farm season was upon us. Two weeks after Emmy’s diagnosis the first chicks of the season came. At the time, it was still just my husband and I doing everything: morning and afternoon chores, collecting and washing the eggs, making the wholesale calls, running deliveries, doing the farmer’s markets in the summer, and all of the back-office work that comes with a small business. We transferred Emmy’s early childhood intervention from our previous county to our new county, but that was about all we had the energy (or money) to do.
Emmy aged out of early intervention services on her third birthday in April. She started Special Ed Pre-K at the local elementary school late August. Between April and August, we did no sort of therapies or interventions whatsoever, unless you count playing with play-doh. Sometimes this makes me sad. Where would her hand strength be if we had committed to doing therapy putty for a few minutes every day? Where would her language be if I had been more intentional in mine? I wonder. But those are my bad days. Because Emmy got something most kids do not get: to be with her family all the time, even if it meant schlepping her with me in the back of the car to do farm chores. And she got an abundance of outside time. She spent most of that summer chasing hens and feeding baby chicks. On the weekends I didn’t man the farmer’s market, I would take her and her little sister to the river beach down the street from us. It was exhausting and far from idyllic when viewed through my eyes — my husband lost his software development gig that summer, making us solely dependent upon farm income, we knew next to nobody in town, the closest family we had was almost two hours away, and heritage hogs constantly test boundaries and patience. But I think it was a good summer for the girls, and I tell myself that has to count for something.
August 2018 she started pre-K, and I couldn’t have asked for a more wonderful teacher. Mrs. Y.* was a 30 year veteran of special education with just about every single certification you could search for. At one parent-teacher conference she said to me “I could retire at any time, but I just love these kids so much I’m going to keep doing it until my knees give out.” She was so calm, understanding, and loving. Emmy flourished in her classroom and it was a joy to see. I felt so much relief, knowing there was someone else in the world who “got” my kiddo, and it took so much of the pressure off of me, too. I was still trying to farm and parent full-time, and it was starting to wear me thin. I fully admit to just surrendering all of Emmy’s schooling and therapy to the Pre-K teachers and therapists. I’d go to every parent teacher conference and I loved the daily reports Mrs. Y. sent home, but I had other areas of my life that needed attention, too. Particularly the farm I was trying to keep afloat.
Summer 2019 proceeded much in the same way Summer 2018 had. Emmy was out of school and spent her days on the farm with me and her sister, who was now old enough to walk. She went to daycare three days a week, and had extension service OT and Speech once a week. We continued to muddle through. She seemed happy, and was growing like a weed, but I was starting to have this nagging feeling that there had to be something more I could be doing. She was making progress, but slowly. Everyone could tell how smart she was, it was just that we couldn’t get through her shell. I wanted to connect with her, and have her connect with the world beyond the farm. But again, I lacked the bandwidth to do so. However, at the close of the season we hired our second farm-hand, to start in 2020. There was a light at the end of the tunnel. I felt that I could take a more active role in Emmy’s education again.
Our Second Autism Diagnosis
It was also high time she saw a developmental pediatrician again. I decided to try to find someone closer to us. Wait times had just gotten longer. Most doctors weren’t scheduling for less than 12 months out. Some were 12–18 months out. I made an appointment at the doctor with the earliest available appointment, spring of 2020. Then I put myself on every single cancellation list I could, ready to jet off at a moment’s notice. No cancellations came.
What did come was the pandemic, and skyrocketing stress levels and isolation. I pulled Emmy out of school the first week of March, only to have schools shut down a week later. Our rural county was ill prepared for such an event, and four year olds are only so well equipped for homework, anyway. The school sent us huge packets of worksheets, which I got out exactly once to try with Emmy, only to have both of us end up in tears. Once again, we gave up on schooling and therapy. I also pushed Emmy’s newest developmental pediatrician appointment back until May.
Filled with pandemic trepidation, we finally went to our new doctor, at a private practice an hour and a half away. We met briefly with the doctor, who looked over our files, asked a few questions, glanced at Emmy, and recommended we get a Vineland evaluation. She explained that it was a useful tool in assessing progress, kind of like those growth percentile charts the doctor shows you at every well-child visit. Say, for example, Emmy is performing two years below age level in receptive language skills at the first assessment. At her next assessment, we can plot her improvement on the graph. We’ll be able to tell not only if she’s catching up to her peers, but if not, is she at least progressing at the same pace as her peers. I agreed and scheduled an appointment for six weeks out.
We made the hour and a half trek again for the Vineland test. It was a two-hour session with a young clinician mostly centered on set play-based actions and a long questionnaire for me. Emmy, once again, engaged reasonably well. “We’ll call you with results in six weeks!” the evaluator chirped cheerfully at me. After this appointment, we went through the McDonald’s drive through to get an ice cream. As we sat in the parking lot eating our sundae’s, I looked across the street and realized we were sitting across from the Children’s Museum. November of 2018 Emmy’s class had taken a field trip there. She had loved the Foucault pendulum, the giant lite-brite wall, and the small room of amphibians and fish (particularly the nondescript Mexican Cave Fish, of all things). She had been engaged and happy and it was a fond memory for me. I wondered if we’d ever be able to do something like that again.
Our Third Autism Diagnosis
Six weeks later I got a call back from the other doctor in the practice. “Emmy’s test results indicate an Autism diagnosis, as we suspected,” he started, and proceeded to go into detail about percentiles related to receptive and expressive language, social emotional skills, and a whole bunch of similar terms that were starting to become familiar. He ended with recommending another test, the ADOS test.
I was exasperated. “She’s been diagnosed with Autism twice now. Do we really need a third? Why didn’t we just start with the ADOS test?” I asked.
The doctor explained again that the Vineland assessment is good for benchmarking growth, and said that with an ADOS test she would qualify for the fullest range of services, up to and including Medicaid and disability, and up to 40 hours a week of ABA, or Applied Behavioral Analysis Therapy, would be covered. We’ll talk more about ABA in a minute, but first let’s finish up with this ADOS test. It was going to be $500 with our insurance, but the doctor assured me she would qualify for so many services afterwards that it would be money well spent. So we scheduled the ADOS assessment for January 29, 2021. That same day I put calls into three separate ABA agencies. Two did not take insurance other than Medicaid, one did and I provided my information and waited for a followup call.
Late February I received a follow-up call from our potential ABA provider saying that our ACA insurance plan, did not cover ABA services. I told her I probably jumped the gun as I did not have Emmy’s “official” Autism diagnosis through the ADOS test on file yet, but would be receiving it in early March. The provider said that our insurance had categorically denied any coverage of ABA therapies, regardless of any existing or future diagnoses. I decided to wait until we had our official diagnosis to tackle that problem.
On March 5th we drove back to the doctor’s office for what really could have been a telephone or zoom consultation. I only mention this because vaccines weren’t yet readily available and I asked directly if we couldn’t do a tele-consult instead. I was flatly denied. We discussed Emmy’s results, which were almost comically identical to her two previous autism diagnoses. But this time, I came with questions. I had been doing my homework while waiting for these results.
Disappointing Conversations
First and foremost, I wanted to know if there were any other therapies he recommended, besides ABA. In my research, it became clear that Autistic adults were strongly opposed to ABA therapy.
“Well, I don’t know why they’re so opposed,” this doctor who supposedly interfaces with Autistic individuals every day told me, “ABA is all around us. You use ABA tactics on your husband when you want him to take out the trash. You use ABA tactics at the dinner table when you want your kids to eat peas. It’s all about massaging behaviors.”
I was less than impressed. I also expressed concerns over the fact that he was recommending forty hours a week of therapy. How was my five year old child supposed to go to school, go to therapy, and have time for a normal childhood?
“Well, forty is the maximum number insurance will pay for, so I always prescribe that. If you want to do less, that’s up to you,” he said, looking sternly over the top of his reading glasses, “but the more you can make time for, the better the outcome. Also you yourself can get certified as an ABA facilitator and then be doing a lot of it yourself, if you wanted to.”
Thanks for the job on top of all the other shit I have to do, I thought. “I’d like to talk to you about that insurance coverage, actually.” I told the doctor, “I was told by the ABA provider we were trying to contract with that our insurance will not cover ABA regardless of any existing or future diagnoses.”
The doctor threw his hands up in exasperation. “Well, I don’t know what to tell you about that, because it is state law. And they have to. I’ll write you a note you can send them if you want.”
Thanks. For. Nothing.
I decided, with reservations, to try to pursue ABA. I was going to be with Emmy at every session, and I would be able to tell if it was not working, if she was unduly upset during sessions, or if they had any practices I didn’t agree with. But first, I was going to have to get my insurance to pay for ABA. Here is a quick rundown of how that went:
When I got home from the developmental pediatrician I went online to read the State Code. I found the specific section regarding Autism and Insurance coverage and gave it a cursory overview.
On March 10, 2021 I called our insurance to get to the bottom of ABA coverage. I was passed between customer service, authorization, and two representatives in the Autism department before reaching a case worker who repeated that it was not covered. I provided her with the law I was citing, and she said she would look into it, and look for covered therapies in our area.
On March 17 I received an email from my case worker saying that ABA was still being denied and that there were no covered therapist/therapies in our area. I requested to speak with whoever was giving her guidance on the law and to file a grievance on our behalf.
On March 22 I followed up, and waited until March 24 to receive a return call. I was told again that the law did not apply, and found the SCC guiding document that confirms it. As it turns out, insurance providers in our state ARE required to cover ABA in all cases except for ACA marketplace plans, like the one I had.
March 24 I filed a complaint with classaction.org to see if I could get a class-action lawsuit started.
On March 26 I called the Senior Insurance Market Examiner of our SCC for guidance about how to go about changing the law, particularly the subsection that creates a giant loophole for marketplace plans. Suffice to say, it was more lobbying than one person can reasonably handle.
I received a pass from classaction.org that day as well.
By this time I had spent the better part of a month chasing something that my heart wasn’t really into anyway. Now I was just doing it because I was angry. I decided, after a lot of angry tears followed by deep breathing, that this wasn’t the hill I wanted to die on. Screw ABA, screw that stupid doctor, I was going to do what was best for MY child, and I was going to do it MY way.
Kindergarten
If you’ve made it this far, don’t despair. Things are about to get much, much better. I’ll just pause to remind you that I go into so much detail so that you perhaps can avoid some of the aggravation I have faced. Perhaps you can ask for an ADOS test first if you suspect autism, instead of having to shell out hundreds of dollars on other tests. Perhaps you’ll make that first appointment today because you now know how long the waiting times are. Perhaps you can check your State Code to confirm if the services you want are covered, before wasting time going after the ones that aren’t. My most ardent wish is that you and your child benefit from the twists and turns our journey has taken.
While we were getting tested, and retested, and denied ABA and pushed towards ABA, Emmy started kindergarten. It was Fall 2020, and all schools were virtual. I can’t imagine it was easy, but I think our little county did a stellar job in a terrible situation. All children were sent home with chrome-books and wifi hotspots, if needed. The buses dropped off new work packets and picked up the old ones every Friday. Hot meals went out daily to the families that qualified. But again, it was virtual school, and Emmy was in kindergarten. Regardless of neurotype, no kindergartner is meant to spend that much time in front of a computer.
Vaccination rates were (and remain) low in our county. So when the school decided to go back to partial in-person in the spring I elected to keep Emmy home. Unfortunately, the quality of the teaching took a nosedive. I want to make it clear I do not blame the teachers. How they were expected to teach to a room full of kids and a screen full of kids at the same time is beyond me. It was beyond anyone’s capacity. I decided to pull Emmy out and officially home school.
Taking Things into my Own Hands
I also decided to take therapy into my own hands. I saw what the speech therapist was doing with Emmy in the weekly virtual sessions and realized why so many of her IEP goals weren’t being met: Emmy’s understanding of the world is very literal. So cutesy little games with dinosaurs talking to flowers in an effort to learn prepositions or answer WH- questions just read as pure nonsense to her, and she saw no point in participating. She has always had a very low threshold for bullshit.
Take those prepositions, for example. I agree wholeheartedly that prepositions are an important building block of understanding, and Emmy learning them was a very good IEP goal. If I tell her “your bear is under the bed” or “your shoes are next to the door” and she doesn’t grasp the difference between over/under or next to, how can she utilize that information?
I devised two games for preposition help. First, I drew an empty room. I cut out the door so it swung open and closed. I also drew a floor lamp, ceiling fan, and outlet, slapped some tape on the back of them, and started moving them around my room illustration. “Where is the lamp?” I asked Emmy. “Next to the door,” she replied without skipping a beat. “Can you put the ceiling fan over the door?” Boom, she did it. Because it made sense.
Next I put her My Little Ponies in a nine by nine grid. “Who is next to Pinky Pie?” “Twilight Sparkle.” You got it, kid.
“Who is behind Twilight Sparkle?” “Applejack.” Awesome job. And so on and so forth.
It was our breakthrough moment. I felt like I could do this, and I got excited. I started looking for ABA alternatives myself. I found RDI, or Relationship Development Intervention. In a very brief nutshell, it focused on nurturing the social relationships that Autistic kids sometimes struggle to build, and how learning and life skills are built, incrementally, on top of nurturing those social skills. Emmy could read above grade level and had solid math skills. A lot of the language skills seemed more about motivation than actually needing to be taught how they worked. So this sounded perfect.
I called the county’s Special Education Coordinator and told her of my plan. “Emmy has the academics, we need to focus on the social and emotional for a while. This is my plan for the second semester.” I laid it out for her and held my breath, waiting for her to say it was a terrible idea, that I was a terrible mother for suggesting such an alternative path, why didn’t I just try ABA or place her back into in-person learning if I was so worried about social development.
“I think it’s a great idea!” she said. “Keep us abreast of how it goes. Emmy is up for her 3-year IEP evaluation in the fall and I can’t wait to see what you all do, because I know you’re going to do fantastic.”
So with that blessing, we dove in.
I’ll write more about our time doing RDI, our decision to homeschool through first grade, Declarative Language, Gestalt Language Processing, and all of the other fantastic tools I’ve learned about and utilized in later posts, because they deserve their own time to shine. I’ll also write about our on-going saga in getting Emmy Medicaid, because if I include it here the post might be twice again as long. Also, I prefer to end on a high note. We continue to homeschool, at least for the rest of first grade, and are constantly evolving our therapy program to respond to Emmy’s needs as they arise. It has not been without its challenges, but it is a joy to watch my child grow and acquire new skills. To everyone on a similar journey: you are not alone, you can do it, there are therapies out there that are right for your child, and I wish you all the blessings and time-saving tips in finding them. Thank you, so much, for letting me be a small part of that journey.
*names have been changed.
Annie Newman is a substitute teacher, mom, and aspiring children’s book author raising two children: one neurotypical and one autistic. You can also follow her day-to-day learning on Instagram and on Tiktok.