A Birth Story and Journey to Diagnosis
- Kate Amoo-Gottfried
- Feb 26
- 10 min read
Trigger warning: This is Kate’s birth story, but includes references to stillbirth. Jump to the “First Move” section heading if this content is not right for you.
Surrender
For my first two pregnancies, we were living in London, UK. We had been trying to conceive for well over a year and I was elated when I found out that I was pregnant. I went to our local GP, part of the free National Health Service in the UK. I thought maybe they would do a blood test or something else to confirm. Nope. The GP said, “You can pee on a stick again, but I’m sure it’s just the same as you did at home. Here are some prenatal vitamins. Don’t eat sushi or cold cuts. Here is your appointment with the midwife.”
That first “real” prenatal appointment, I would have been 14 weeks pregnant. What?! Well, the actuaries were right. 20-25% of pregnancies end within the first 3 months of pregnancy. It is rare for a woman in the UK to see a midwife before 12 weeks of pregnancy. In my case, I had a miscarriage at 12 weeks.
My husband and I had been through some of our own health complications in the UK and had learned a bit about navigating that system. For our second pregnancy, we decided that we should find a private obstetrician, which would be partially covered by the private “top-up” insurance from my husband’s employer. At 6 weeks, I had an ultrasound. The sonographer asked, “Are you ready for this? You’re having twins!!” And so it began.
We joined our local prenatal group and a specialized group for “multiples.” At one prenatal session, we picked from some cards to represent how we were feeling. I was the only person in our group having multiples, but I chose, “Bring it on!” I was ready. Nervous, excited, but ready to face whatever would come. I knew that twin boys would bring some chaos in the early days.
My husband chose the word, “Surrender.” Little did we know at the time how much that word would serve us. It serves us to this day.
Birth
Parenting is full of dreams, expectations, even plans for the future. My husband and I would consider ourselves ambitious people; we’re planners, organizers, and go-getters. We’ve always had plans and goals as individuals and together as a couple. But parenting, oof. We’ve learned (sometimes the hard way) to let go, to be in the moment, and to put one foot in front of the other little by little.
We had a planned c-section. Both boys, Marlowe and Avery, were breech and a c-section was the safest option for delivery. We arrived at the hospital with anxious anticipation to meet our babies. On the operating table, we had the shock of our lives. Marlowe was born first. We heard his cries and he was taken to a table for a quick examination and clean up. Avery was next. He was limp and there were never any cries. Surrender. This is parenting.
Maybe because of our rough entry into parenting, my guard and radar were “up.” Our early days with Marlowe were filled with learning to breastfeed and the usual diapering, bathing, swaddling, feeding, sleeping? routines.
Lucky Encounter #1: Thank goodness the midwife-in-training, who attended our traumatic birth, observed me and Marlowe before we left the hospital after 5 days. She was the only one to notice my bleeding nipples and that he was barely latched. We had a mini lesson and things quickly got better.
Lucky Encounter #2: Thank goodness for our amazing angel of a night nurse. I remember calling to tell her that there would only be one baby instead of two, but that we would still really appreciate her support. I needed her more than ever. She was a steady presence for our first two weeks which were a blur of grief and new joy. She heard Marlowe’s screams when we entered the bath. She suggested swaddling him in muslin. It helped. Swaddling Marlowe in tight compression became an early and somewhat reliable means of soothing him.
We read about the 4th trimester. Our new baby seemed to desperately want to return to the tight womb from which he was pulled. He screamed putting his onesie over his head. His legs stayed curled and tucked - for months. Even his arm and hand were held in a tight, almost spastic position.
First Move with a Baby, Trusting My Gut, and a Nudge
Fast forward 6 months, we moved from London to New York and bought a house in the New Jersey suburbs (site unseen). Did I mention we were ambitious? Baby Marlowe HATED tummy time. I propped him up in a seated position, putting pillows around him in case he toppled over. He sat upright stiffly. But he could not roll over. He could not move from his tummy or back to a seated position or get out of a seated position - only occasionally he just fell over. He seemed very far away from learning to crawl. He babbled constantly and seemed to have so much to say.
At our third visit to our NJ pediatrician’s office (three visits, three different pediatricians), I asked how concerned I should be about his lack of mobility and locomotion? I asked specifically about an evaluation and referral to our state’s Early Intervention program. The doctor replied that we should wait six months until our next visit. It didn’t sit well with me.
I talked to my friend and neighbor. She was a pediatrician but was currently on leave with her 10 month old twins and her two older kids, both under the age of 5. She was in parenting survival mode. She was deeply attuned to her kids and well-trained. She also remained even-keeled in the midst of four children under age 5.
Lucky Encounter #3: Her sage advice was, “Kate, you know your baby best. I don’t see any immediate red flags, but there is absolutely nothing stopping you from calling the Early Intervention office and asking for an evaluation. The worst case scenario is that they say he doesn’t qualify for services and you walk away with more information and insight about Marlowe’s development.” It was the push I needed. I made the call. Marlowe was evaluated. He qualified. We began seeing a physical therapist at home twice a week and had “developmental intervention” also twice per week to work on things like pointing or gesturing toward objects, getting Marlowe’s visual attention to adult faces, and working on his pincer grasp.
A Baby Brother?!! And another Move?!!
Life continued its trajectory of surprises and shifts. When Marlowe was 10 months old, I learned I was pregnant with his baby brother, Miles. My husband’s job wasn’t quite what it was “supposed” to be and opportunities in Silicon Valley were calling. We had baby #3, sold our suburban home, and moved across the country. Another blur of a big move and two kids under two followed. It was another lesson in surrender. I wasn’t in the right head space or physical space to be welcoming a new baby. To say I was under stress was an understatement.
It took almost a year, but I was able to get Marlowe re-evaluated with the California Early Intervention System. I also had some questions and concerns about Miles’ motor functions and requested an evaluation. Both boys qualified for physical therapy with Early Intervention. Another lesson learned: keep observing, keep questioning, and don’t be afraid to get second or third opinions.
Lucky Breaks and Barriers
Lucky Encounter #4: Our PT strongly and firmly urged me to “demand” an OT evaluation for Marlowe before he “aged out” at 3 years old from the Early Intervention system. We had our evaluation and then started private OT in our home.
Lucky Encounter #5: Our OT, Lexi, became another angel and stabilizing force in my parenting world. She made visual aids, scaffolded Marlowe’s many motor planning challenges in the bathroom, and gave me an education on sensory systems, regulation and dysregulation, and reflex integration.
Around this same time, I got on a waitlist for a developmental pediatrician. In hindsight, I also should have trusted my gut more and ignored our early intervention case worker. I should have pushed for an intake with our public school district, which is often the direct “hand off” between Early Intervention systems and the public schools. Our School District did not have a universal preschool program (sometimes known as 3K or 4K or preK). The barrier: Our case worker told me that Marlowe would NEVER qualify for school support at age 3 because those supports “really only focused on speech services and he was “way too verbal” to qualify.”
Intro to Public Schools and our First IEP
By age 4, I was already getting anxious about Kindergarten and decided to write to our public school district to request an evaluation. Again, Marlowe qualified for and was found eligible for public school support services. He was eligible under Autism. This was the first time I had heard that label for my child. Early autism screeners in pediatrician’s offices all said no. Marlowe was too social, too verbal, to be autistic according to the pediatricians and the screener tools. (Oh if I only knew then what I know now.)
The public school district offered placement in their self-contained preschool classroom along with related services including occupational therapy and speech therapy (Marlowe had significant articulation challenges). After a discussion, and sharing that Marlowe was quite successful in his current, mainstream preschool classroom, we agreed that the District preschool classroom was not a great fit for Marlowe. However, we were still able to utilize the recommended related services.
I learned some important lessons from this very first IEP meeting. First, you don’t have to accept everything that is recommended. Friends and other teachers were shocked that we were able to access related services without being part of the public preschool program. The lesson is to ask for what you need. Keep centering the needs of your child and think outside the box and the menu that is presented. Special requests are (sometimes) allowed and granted.
Diagnose and Dump
In parallel, we were finally able to meet with the Developmental Pediatrician. We completed many parent questionnaires, discussed Marlowe’s developmental history, and the developmental pediatrician observed him throughout our 90 minute conversation. He concurred with the school district’s observations and assessment. He provided us a letter and provided an official Autism diagnosis for Marlowe. His first diagnosis of many.
I think we also participated in some genetic testing which was totally inconclusive in our case. We were told this was a potential and likely outcome. But I remember thinking at the time that maybe, just maybe, genetics could be our crystal ball into the future and we’d have some guidance about what might lie ahead.
The developmental pediatrician confirmed that OT and speech services were good therapeutic interventions to support Marlowe. He suggested also looking into ABA but since Marlowe was already 4 years of age, our doctor shared that “Marlowe may have exceeded what ABA could do for him.” In my cool, calm and people-pleasing manner, I thanked the doctor for his support.
In hindsight, what kind of support was that?! Maybe I should be grateful that I managed to convey that we “had it under control” and I wasn’t presented with multiple doom and gloom pamphlets as I’ve heard from many parents that this is quite common. I’m also grateful that we weren’t pressured into immediately enrolling in ABA services.***
We had a decent support team in place for the moment, but after a long wait to see an expert developmental pediatrician, we still had no guidance on what the future would hold, what supports Marlowe may need (or could be helpful) in school or other environments.
I recently learned from the book, “I Will Die on This Hill,” that we had experienced the “diagnose and dump.” Apparently, it's a thing that many, many parents experience. You receive a diagnosis but there is no roadmap or flowchart or manual about how to parent autistic kids or what current or future support needs could look like.
For our family, we again reached for our word: Surrender. We took time to reflect on our own emotions and the many shifts in our emotions over time. We (co-parents) were rarely, if ever, on the same page as each other - with our emotions or our next steps. But we surrendered and took the next step, and the next step, and we’re still walking this path.
*** There are a number of arguments against Applied Behavior Analysis (ABA) therapy, including:
That ABA therapy aims to "normalize" autistic people, even if they don't want to change. Critics also say that ABA therapy doesn't consider each person's unique strengths, interests, or sensory profiles. They say that ABA therapy can increase stress and anxiety in autistic people, and that it may overlook their underlying emotional needs. Some say that ABA therapy is too rigid and focused on compliance and performance, rather than building skills. Critics also say that ABA therapy can be overwhelming for autistic kids, especially those who are nonverbal or have trouble communicating. Some say that ABA therapy can provoke negative emotional repercussions and trauma, such as PTSD, anxiety, and depression. It may encourage people to suppress or hide who they really are to fit into society. And it's unclear whether children can transfer what they've learned with a therapist to a natural environment.
From the Autistic Self-Advocacy Network: Many therapies can be helpful for autistic people, like physical therapy, speech therapy, occupational therapy, and AAC. We think these therapies should be easier for autistic people to get. But there are some therapies that focus on making autistic people seem “normal” or appear “less autistic”. The most common type of this therapy is Applied Behavioral Analysis (ABA). ABA uses rewards and punishments to train autistic people to act non-autistic. ABA and other therapies with the same goals can hurt autistic people, and they don’t teach us the skills we actually need to navigate the world with our disabilities. Sometimes people say they use ABA to work on other skills, like communication. There are better ways to teach those skills. We work to make those better ways available to everyone.
ASAN does not support any one kind of therapy for autistic people. Different things will work better for different autistic people. The most important thing is that any therapy should help autistic people get what we want and need, not what other people think we need. Good therapies focus on helping us figure out our goals, and work with us to achieve them.
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