Taking Flight Developmental Pediatrics

07/24/2025

Reminder to Missouri families: The Northwest Missouri Autism Project Family Flexible Assitance Program application is now open with an August deadline.

Family Flexible Assistance Program Funding Announcement Northwest Missouri Autism Project

07/02/2025

Let's talk about why I use person-first language in posts, although some in the autism community prefer other language and embrace "autistic" or "autistic folks" as their preferred terminology.

First, I have a child with Down syndrome (and other diagnoses, he collects diagnoses) and in the Down syndrome community, person first language is the standard. Why? That goes back about 50 years when many individuals with various disabilities had to fight to be seen as individuals and for equal access to, well, everything from literal structures to education and, especially in groups with intellectual disabilties, diagnoses alone were used slurs. I do think some people who are aggressive about disliking person first language aren't fully appreciating how hard some communities fought for that language.

Second, it is a preference, even in the autism community. There are several interesting articles from the NIH and the autism community that highlight discussion groups. It would be a pretty big (and sometimes incorrect) assumption that everyone uses the same language. That is ok, though you can find VERY strong disagreement in the autism community. The deaf community is probably the community in which this is now the preferred language.

Third, person first language fits best with my religious and world views. It also fits best with my medical training. I am primarily a medical practitioner and, on rounds and in the hospital, person first language is most appropriate.

Fourth, many times I am diagnosing individuals with ASD. They have not fully explored within their family and social group the language they wish to utilize. If a family expresses or uses other language, then I will follow along, but generally person first language is a more respectful way of approaching families early in their journey. They can then decide for themselves how they fit in the autism community and identify.

Finally, many times my patients have multiple diagnoses including genetic diagnoses. I don't know which community they are going to primarily embrace or what the major challenges will be as they grow and develop.

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06/19/2025

Let's talk about sensory integration disorder, sometimes sensory processing disorder is used interchangibly. I usually prefer integration because there are greater implications for neurologically organizing your body and overall functionality.

First, kindergarten class lied to you, you don't have 5 senses, you have over 20. The exact number is still being discussed. Most of which relate to either internal sensation (taking a big deep breath or satiety) or where your body is located in space.

Knowing where your body is located in space is so important for attention because we all get very fidgety and can't attend well when we don't feel secure in our bodies. We've all experienced this to some degree. When you've been sitting for too long and you just NEED to move. You don't consciously think "I don't know where my body is in space", but you feel the need to move and stretch and you feel better after doing so. The most extreme examples are vertigo and motion sickness, when people literally become ill.

Sensory integration is very challenging to measure in studies because no 2 people experience the exact same symptoms or presentation. Also, these sensations are very challenging for adults to verbally describe, much less neurodivergent children. So when measuring outcomes, I strongly prefer how many occupational therapists will measure progress -- "ability to attend to a task for ### minutes". Notice "attend", not necessarily "sit perfectly still". Why? Because they are frequently working on what input helps the child self-regulate and attend and that may include wiggles or alternative seating. Occupational therapists are looking for that very fine balance of input and behavior and that takes time and experience to develop.

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06/15/2025

Let’s talk about Leucovorin and why I am not prescribing it.

First, Autism is NOT a single process. We know there is a strong genetic component and right now about 250-300 genes known to be associated with autism, with an expected total of 500-1000. Very few of those genes impact the methylfolate/folic acid pathways. Why is this relevant? Because there is no single cause of autism, so there is no single medical treatment. Recommended therapies are based on symptoms and there are therapies which can help with symptoms. There are some medications we use to treat specific symptoms, again very patient specific.

Though its main use is in cancer treatments, Leucovorin is also used to treat cerebral folate deficiency, which is a serious neurologic disorder. This is a very rare disorder, estimated less than 1,000 people in the United States. I have treated a patient with this disorder and he was not a typical toddler with autism (though he also ended up an autism diagnosis after treatment). He was far sicker and physically declining, which is very different than how most children with autism present.

Cerebral folate deficiency is not accurately measured by folate receptor autoantibody blood tests. There is a known gene, but the gold standard is lumbar puncture (spinal tap). Lumber punctures are understandably not recommended for most people without specific symptoms because it is invasive and requires sedation and has real risks. Additionally, I am not qualified to read those very complicated metabolic results.

CFD is NOT diagnosed off blood tests. There is currently a single company performing the folate receptor autoantibody blood test. They recommend repeat testing if you suspect until you get a
positive. This is problematic because at any time 5-15% of the population has autoantibodies in their blood, and they can come and go without necessarily causing disease. This is a mystery of the human immune system which we do not fully understand.

Leucovorin is not, by itself, usually frankly hazardous. It is renally excreted, and so if your kidneys are functioning, you will p*e out anything you don’t need.
- But it is also true that the placebo effect, which is VERY real, results in 20-50% of patients reporting some improvement with any medication. That does not mean medications are bad, but that we need to be very specific about results (one day I might do a post critiquing outcome measures utilized in literature to assess response to pharmacologic agents in autism-specific studies).
-Outside of a very select few studies in select patient populations, there is not good evidence for use in most patients with autism.
-Leucovorin can have side effects (see below)

General considerations about supplements, including over the counter Leucovorin:
-taking too many supplements increases the risk of side effects. By the time a person is taking 5 drugs/supplements, there is a 50% chance of interactions.
- Many supplements are concentrated and hard on the GI tract. GI symptoms are the #1 side effects of many supplements, and GI issues are very common already. GI side effects are documented with Leucovorin.
- Many supplements also have herbs or compounds blended in or are not 3rd party verified or monitored by the FDA.
- Most supplements do not have evidence that they are helpful for most people.

So, I am NOT globally recommending Leucovorin nor am I prescribing it. If I feel a child has symptoms of cerebral folate deficiency, I refer to metabolic genetics and/or neurology, and
fairly urgently. That child will need a full evaluation.

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05/17/2025

Let's talk about genetic testing. Current recommendations are that everyone with a diagnosis of autism be offered genetic testing. Genetic testing can be very useful for trying to understand the child and help families, especially when a child isn't progressing in therapies and services as hoped OR when there are other medical symptoms present.

Often, families of children with autism feel like their concerns about GI issues, sleep, or possible seizures are minimized. It is heart breaking and far too challenging to help families advocate for comprehensive care when symptoms are brushed off as "they are just autistic". Sometimes there are underlying genetic explanations which truly help families push for more investigation. Tailored therapies are still rare but increasing with our growing knowledge. This is most common in disorders with seizures, but are rapidly increasing in number. Sometimes genetic results help us know what to expect -- increase chance of seizures, increased risk of specific GI disorders, etc which can help families access care.

For many genetic diagnoses there are also comprehensive, multi-disciplinary clinics which are both convenient and helpful for families. Yes, they may require travel, but many families appreciate these yearly visits with people who have met dozens of people with specific genetic diagnoses. So many of these diagnoses are so rare that I may meet 1-2 patients in my entire career. I can read the studies and papers, but a group of professionals who have more experience can be so helpful and reassuring to families, and, selfishly, I learn from the reports they bring back and the care guidance can be invaluable.

Our genetic knowledge is increasing at such an amazing rate that the current recommendations are to repeat testing every 1-2 years if you are highly suspicious of a genetic explanation. Ultimately, this is a decision in which clinicians should support the family's wishes with open conversation and pros and cons. And, it is not a decision which (in almost all outpatient circumstances) must be made immediately.

NOTE: this discussion does not include pharmacogenetic testing, which is very different

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05/08/2025

Taking Flight opened a year ago this month after months of planning. Business has been great and thank you for your support. I did 93 autism evaluations this past year, which may not seem like much when the wait lists are so long, but I am only one person working part time. With our current bookings, I will probably do 120-140 over the next year.

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04/22/2025

So what do I consider when discussing therapy options with families and making recommendations? These aren't exactly in perfect order, so consider this a flexible ranking:

1. Needs of the family and child - What is the most impairing behavior/need at this moment? Does the child need more intensive services or would more limited direct services be appropriate to meet their needs? Does the child need more of a scaffolding approach with p*er models versus 1:1? Does the child have co-morbid apraxia of sp*ech and need more frequent and intensive sp*ech therapy?
2. Age of the child -- there are therapies more appropriate for specific ages.
3. Family goals and preferences -- does the family home school? Are parochial schools their preference? Public school? How would various therapies fit into their lifestyle.
4. Parenting style
5. Previous therapies and experiences with those therapies -- like all therapies, sometimes there can just be a mismatch between child and therapist. It happens. Sometimes there are different therapy techniques to consider and many therapists have training in specific modalities and so the same therapy with a different approach may be more effective.
6. Feedback and relationships with therapy providers. I have had the pleasure to meet many therapists in different practices and learn about their treatment styles and approaches.

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04/17/2025

It is infuriating to feel compelled to address such statements from a leading public health figure, but claiming people with autism "will never pay taxes", "will never hold a job", and "will never toilet train" is beyond incompetent. It is harmful rhetoric that displays a level of ignorance incompatible with holding such a post. It is also NOT a disease. It is a disorder, right there in the name "autism spectrum DISORDER".

While some individuals with autism do require intensive services and support, it is insulting and harmful to the 5+ million people in the US with ASD to assert such things as blanket statements. Additionally, the level and type of support a person requires is not necessarily stable over time. In fact, in my ASD assessment template for very young children, I include a statement about my inability to predict how much support a child will need when they are school aged. Why? Because I have met many minimally verbal preschoolers who are fully conversational when they are 7 years old. Which is fabulous!

So let us review some FACTS:
1. Most people with ASD will develop spoken language. It may not be fluent, but the majority are verbal communicators
2. Most people with ASD will toilet train. Even some nonverbal individuals toilet train!
3. Many people with ASD will hold jobs. They may be supported employment, but some also end up with PhDs or MDs.

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04/16/2025

The New York Times published an interesting article about ADHD recently. It was interesting.....but I didn't fully agree with at least the implications of some portions of the article. It very much felt like an academic history for discussions in training programs more than what I would expect from an article for the public. However, The Child Mind Institute published a decent reply with some valid critiques of the reporting:

A recent New York Times Magazine article by Paul Tough raises questions about the increasing number of children diagnosed with ADHD and the long-term use of medication for the treatment of ADHD. While concerns about possible overdiagnosis of ADHD deserve careful attention, it is equally important to...

04/03/2025

Happy World Autism Day to all of the wonderful people in the world with autism. If you've met one person with autism, you have met one person with autism. No two have the same path, and that is not only ok, it is good!

And cheers and hugs to each support team -- the caregivers who spend so much time researching and ensuring their children have every opportunity, the therapists and teachers who believe each child has so much possibility, the social workers ensuring access to services....and so many more. You are seen and valued and appreciated!

Don't worry if your path looks different than someone else's path. The world would be very boring if everyone's life looked the same.

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03/30/2025

What am I reading and learning about recently?

Cerebral Visual Impairment
PANDAS/PANS (wonderful new paper with the AAP recently)
Genetics (always some new updates in the genetics world)
Groups for whom the ADOS is most useful (authored by my lovely mentor, Jill Fussell)
Sleep (again, bedtime consistency is very important)

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03/21/2025

Happy World Down syndrome day to all our friends with extra chromosomes! Especially our dear Ben, the perfect caboose of our family who makes our lives so much brighter.