Last updated on November 26, 2023
Our daughters, now known as “Leigh” and “Anne” on The Autistic Me, are Neurodiverse. They share some traits, share traits with me, and also have their individual needs.
Their adoption was finalized in May 2019, or as they say, “We adopted you, Daddy!”
The girls are everything to me. We love them, cherish them, and nothing about them diminishes how much joy they bring into our lives. I never regret having them in my life.
It isn’t easy. Parenting is never easy.
Before writing about the girls or discussing them on the podcast, I tried to explain to them what I’d be doing. I wanted them to understand we value their privacy. That’s why I let them choose their pseudonyms (after informing them that “Belle” and “Rose” were excluded). I also don’t post photos of the girls.
Why write this post or any other posts about the girls?
Many “autism parents” claim I don’t understand their experiences. I receive some fairly rude and insulting messages from these individuals. (Many also suggesting I’m not a “real” autistic, but that’s another matter. They object to the DSM-5 criteria.) I dislike the “autism mom” or “autism dad” labels. You’re not parenting autism. You are parenting a child. And, yes, for a bit more than five years we have been parents of neurodiverse children.
I am writing this to give context to what Susan and I manage, beyond my autistic journey.
Susan and I know what it is like to have one medical appointment after another. We’ve dealt with physical therapy, occupational therapy, mobile therapy, wrap-around supports, one-on-one classroom specialists, IEP meetings, 504 plans, and the need to advocate for supports.
As foster-adopt parents, we also guided the girls through police interviews, court hearings, supervised parental visits, caseworker changes… and more.
Our calendars were always filled. We went years without a break, our choices restricted by the foster-adopt realities.
As I have written, Susan and I became foster-adopt parents because we had been trying to start a family. We knew children in the foster care system have suffered trauma. Many of the children have medical conditions, some quite serious. We understood that any children placed in our household would need us, and they would need special care.
The foster experience includes its own traumatic experiences. There are state caseworkers, adoption agency caseworkers, lawyers, court advocates, and therapists. During the foster years, and there too many of those, the children worried constantly about being removed from our house like they had been removed for placement.
Uncertainty is stressful and traumatic.
Then there is the guilt no children should have. Leigh was certain she had failed to do enough. She perceived being separated from her birth mother as her failing, not as the failing of adults in her life. As the older of the girls, Leigh was trying to be self-sufficient at three and a half years old. It seemed she was much, much older than her sister. (Anne was 26 months old at the time.)
“Leigh”
Leigh is eight and will be nine in a few months. She loves to read and has a natural talent for art. She also enjoys music. I love taking Leigh to musicals, movies, and on trips. She enjoys learning and asking questions. When Susan and I were considering relocating to Texas, Leigh joined me for the house hunting trip.
The physical effects of neglect remain. A lack of early activity, a poor diet, and other factors likely contribute to weak muscle tone, poor posture, underdeveloped proprioception (body location and movement awareness), and other challenges. She struggles with fine motor and gross motor activities.
Leigh has a “scissor” walk or “braid step” with her legs and feet crossing in front of each other. She trips and falls over herself walking if she gets distracted. Instead of moving her hand at the wrist to eat or write, she moves her entire arm.
She’s shy around strangers, but not at home. Because Leigh is talkative and loves to read, we didn’t notice her potentially autistic traits until a year or two ago. She doesn’t engage with other children, and when she does she interacts with younger children. Her lack of imaginative play was unusual, but everyone attributed this to early neglect.
We’ve hoped she’d make friends at school, in scouting, or while participating in team sports. Susan is now a leader and co-leader for the girls’ Girl Scout troops. Just as Leigh was about to start soccer here in Texas, we went into lockdown for COVID-19. The coronavirus aside, she had not formed bonds with the children in our previous neighborhood. Susan and I know she needs opportunities to socialize or at least time to practice social skills.
Her idea of fun is lining up items, organizing them, sorting, and counting. She can follow LEGO directions and prefers directions over creating her own designs. Leigh can spend hours alone.
Always tapping, rocking, moving her fingers, scratching, tearing, picking at anything, Leigh was at the “wiggle table” in school. The diagnosis of ADHD was never in doubt because people, including healthcare professions, see a child always in motion. I see someone seeking to block out everything else around her.
We have tried fidget spinners and cubes. We have tried sensory balls, seat cushions, and other other aids. She breaks the fidgets… and many other things. She seems to be breaking things constantly.
Self-injurious behaviors increased my concern that she needed additional supports. Even with fidget items, she scratches her skin until it bleeds, picks at her fingernails (she used to bite them), and pulls out hair when idle. We find skin and hair around her room and wherever she sits.
My wife and I are constantly washing our hands and cleaning up around the house. I hate dirt and all things that seem “dirty” cause me distress. Leigh will collect the debris and stash it in containers, desk drawers, and her bed. She’ll collect bugs, cat litter, bits of paper, and anything else that is certain to cause me severe anxiety and panic.
We try not to respond, but there’s no amount of effort I can make to remain calm when I see dead bugs and skin flakes in a desk drawer. If I tell her not to keep dead bugs in her desk, she’ll keep them somewhere else. If I tell her to stop picking at her fingers, she’ll dig into her ankles.
Leigh is the most concrete thinker I’ve ever met, and I’ve met many young autistics and adult autistics. Idiomatic speech, any figurative language, confuses her.
Speech processing presents a serious problem for Leigh. She cannot duplicate words she hears people say. She’s had vision and hearing tests. Her hearing is excellent. But, she cannot repeat a new word accurately. She completely mangles new words. Yet, she does understand them and can give you definitions based on context.
Based on preliminary screening, and birth family history, we are waiting for a formal autism screening. We marked 41 of 50 traits on the initial screening. However, her previous diagnoses must also be considered.
Leigh’s Official Diagnoses:
- ADHD Combined Presentation F90.2
- Anxiety F41.9
- Post-traumatic stress disorder, unspecified (F43.10)
- Reactive Attachment Disorder of Childhood F94.1
- RAD/Disinhibited Social Engagement Disorder F94.2
- Developmental Coordination Disorder F82
- Child Neglect T74.02XA
- Child Abuse – Disassociates from stress/trauma/life
“Anne”
Anne is a charming, energetic, and emotional seven-year-old. She’s an outgoing girl who wants to say “Hello!” (or “Hola!”) to everyone she passes. Unlike Leigh, Anne hugs — often without warning. She loves to cuddle with Mommy on the couch. She just adores being with family.
It’s hard not to like Anne. I don’t worry about her making friends and having a supportive network. She’s a natural connector in groups.
The poor girl is the only extrovert in a house of introverts.
Early on, the caseworkers wondered if Anne might be autistic: delayed speech, self-injurious behavior, meltdowns, and sensory overload. Anne hates clothes, especially shoes and socks. She loves tight hugs and pressure on her hands. She is a proprioceptive and vestibular sensory input seeker, but she avoids bright lights and loud sounds.
She was two years old when she was placed with us. She didn’t talk, walked unsteadily, and was prone to loud and violent meltdowns.
Over time, Anne’s frequent and loud screaming damaged Susan’s hearing. I’ve never heard a child scream so loudly. Stuck in a car with her, taking her from appointment to appointment, Susan’s ears began ringing. Even trying to change a diaper, Anne would scream and kick.
Anne was also a runner. She still has no impulse control, not remembering that we must stop, look, and listen before crossing streets. Whatever Anne wants, she wants it now. Immediately. Ideally, she wants it yesterday. There is no delayed gratification in Anne’s world. If what she wants is across a busy street, off she goes.
However, she has no problem communicating today. She also has no problem seeking out friends. Before the pandemic, she’d play with any child she met at the playground. Whatever you’re feeling, Anne picks up on it. She reads people like an expert profiler.
Unlike Leigh, Anne has excellent gross motor skills. She loves to run, kick, and climb. She throws a ball well and loves to be active. However, she struggles with fine motor skills. Her writing remains delayed; she grips pencils and pens with her fist. Pencil grips help a little.
Anne is the embodiment of ADHD. She is a constant blur. She skips, hops, and runs everywhere. Walking? You can tell she hates to walk. Anne toe-walks and has a “pigeon toe” stance. She breaks toenails often and complains that her hips hurt. We hope that exercises and physical therapy help.
There’s no question she’s neurodiverse, but I doubt (and her doctors all doubt) she’s autistic. ADHD? Definitely. Explosive emotions? Oh, yes. Sensory processing issues? Yep.
Anne’s Official Diagnoses:
- ADHD Combined Presentation F90.2
- Post-traumatic stress disorder, unspecified (F43.10)
- Reactive Attachment Disorder of Childhood F94.1
- Adjustment Disorder with mixed disturbance of emotions and conduct F43.25
- Childhood Depression
- Child Neglect T74.02XA
- Child Abuse
We Understand Each Other
The girls and I understand each other. We struggle with executive functions. We have sensory challenges. We dislike changes to our routines. We’re able to focus on what we enjoy for hours, but we cannot focus on other tasks no matter how hard we try.
I was treated for ADHD, and now both girls are being treated for ADHD. I eventually stopped trying medications, but the girls really cannot finish schoolwork without their prescriptions. That concerns me because I know how difficult school was for me.
Susan cannot understand why the girls and I become fixated on specific objects. She doesn’t relate to the complete collapse that follows a disruption to our routines. I get it when a “minor” disappointment feels like a crushing blow.
Being my partner has prepared Susan to be an incredible mother to Leigh and Anne.
I’m glad we all have each other. We are the family we each needed.