Autism Interview #104: Dr. Natalie Engelbrecht on Late Diagnosis and Autism Research

Dr. Natalie Engelbrecht is a late-diagnosed, registered psychotherapist practicing for over twenty-five years who has a passion for helping individuals with autism reach their potential. She blogs at Embrace ASD on a variety of autism topics, including the latest autism research. This week she discussed her professional background with helping others on the spectrum (including those who are diagnosed later in life), her surprising diagnosis, and how she assesses the latest autism research.

Did your autism diagnosis come before or after you started your autism consulting business?

My autism consulting practice started before I was diagnosed, but changed significantly after I was diagnosed. I have been seeing patients for psychotherapy since 1997. I can see now that in those 22 years I have treated autistic people knowingly and unknowingly.

As a therapist, there are always patients that you have an immediate rapport with. Over time, I noticed that these patients tended to be honest, straightforward, highly ethical, and followed my instructions exactly. Now I recognize these people to be autistic.

How I ended up with a diagnosis was that I was writing on a Q&A website called Quora about the field of psychology. Specifically, positive psychology and neurological differences (ADD, psychopathy, personality disorders, etc.). My (now) partner, Martin Silvertant—who is autistic as well—commented on a research-based post that I had written, asking questions that went through my mind while writing the article but which I did not pursue further (no article can be fully comprehensive on a given topic), and he asked some additional questions which I had not contemplated; he challenged my knowledge, and pushed me to be more thorough and more critical of research, and to explore the subject matter deeper. So I was very impressed with this. This led to a friendship, and ultimately, a deeper relationship.

As Martin was on the spectrum, I immediately went out and bought 6 books on autism and Asperger’s despite the fact that I was on holiday in the UK with my son. Some might consider that excessive, but Martin challenged certain assumptions I had about autism until that point, so I wanted to learn everything I could about autism. In particular, how to communicate with autistic people most effectively, given that they process the world differently.

I suppose it was that arguably excessive yet meticulous way I went about things, coupled with my deep curiosity in things, that caused Martin to suggest to me that I might very well be autistic. My initial reaction was that there was no way that I had autism; I helped autistic people in my practice so I thought I was intimately familiar with their propensities, and I did not see myself in those terms.

Nonetheless, it budded my curiosity and as a result, I took the autism spectrum quotient (AQ), and I scored 39, which meant that I had less than a 2% chance of not being autistic. Here are some statistics on the scoring of the AQ:

• Most non-autistic females score around 15, and non-autistic males score an average of 17. Research indicates that a score of 26 or lower can rule out autism.

• A score of 32 or above: 80% of autistic adults scored above a critical minimum of 32, whereas only 2% of control adults did.

• A score of 34+ in females: It is very rare for a female to score above 34, however, 4% of autistic males do.

This led to me seeking out a content expert on how the phenotype of high-functioning autism in females presents, which ultimately led to my diagnosis. I was thrilled to find out I am autistic, as it explained so much about myself. That said, I was still surprised and I sought out a second diagnosis, which confirmed yet again that I am indeed autistic. Martin was right about his suspicions.

It was my diagnosis and meeting Martin that drove me to researching autism specifically, and writing articles on the subject in order to help others. My autism went unrecognized by a myriad of professionals including myself, yet since the diagnosis I have been able to make so much more sense of my own life and how I relate to others. I want to help others achieve the same, so they can start to better understand themselves.

I am growth-oriented, so I thought about the “super powers” I have—the advantages that stem from my autism—and considered that I had a working model to begin to address the challenges I had faced and not been able to understand. Some of those super powers I never really recognized or acknowledged before my diagnosis. So talking about the potential benefits of autism can play a crucial role in autistic people more readily recognizing their amazing abilities—to cultivate their strengths, and overcome their challenges (so-called “deficits”).

When we started writing about autism on Quora, it was not a popular topic—less than 10,000 people were following the topic, compared to the 57,000+ people that are following the topic now. Martin and I contributed significantly to that increase in interest in the topic, and started being a resource and support for others on the spectrum. 

So things really had this natural progression. I have always been a person that likes to help people work towards their potential, and I really felt that autistics were cutting themselves short. So it became important for me to help support and educate people on the spectrum, to enrich their lives and improve their wellbeing, and ultimately to help them reach their amazing potential. 

Your bio mentions your experience with both qualitative and quantitative research. In general, how do you balance or prioritize the integration of these different types of research when addressing and advocating for support for autistics?

I have always loved research. I used to drive my kids a bit crazy. They would talk about something—some fact or other—and I would say “Is it research-based?”, and they would roll their eyes. Nonetheless, now that they are older, they have caught me on occasion speaking without checking the current research. I think it’s important to stay up to date with the latest research as much as you can, and always question your understanding and assumptions.

I find comfort in research in that it provides a foundation that is not just based on hearsay. Our cognitive biases make us really prone to, well, cognitive errors. For example, the confirmation bias makes it so easy to see what we want to see, but less able to see what doesn’t confirm our beliefs. Research has a way of keeping us accountable, and also recognizing what has a dearth of information, which we can add to. I am fortunate that Martin is brilliant at looking at the methodology of the research, which helps us decide if certain research is valid and relevant or not, and whether we should make it part of our understanding and belief system.

An important aspect of this is to utilize both quantitative and qualitative research and compare the two. Autism research based on large sample sizes can be tremendously illuminating, but it’s also important to engage with autistic people yourself to better understand individual proclivities, interests, opinions, experiences, etc. It’s also by talking with other autistic people that you come to understand what kind of research is actually helpful to us in better understanding ourselves so we can make improvements in our lives.

Ultimately we compare different types of research to see if there is consistency, or whether different studies might in some way complement each other. Sometimes we get new insights after having read different studies, or after thinking about our own experiences. For example, we have come to understand alexithymia (of which certain aspects have been confused with autism itself) and psychosomatization as protection mechanisms of the mind; alexithymia renders negative emotions less accessible, and through psychosomatization negative emotions are dumped in the body so that the mind doesn’t have to deal with it. So even though alexithymia and psychosomatization can cause a lot of challenges, they are really double-edged swords. They are imperfect, but in a way successful adaptations. Autism might be perceived to be the same way, especially if you have trouble controlling the deficits and utilizing the advantages. When we communicate research, we try to highlight our strengths, and it is wonderful when I see research that brings those strengths to light, because I know it will empower us and enrich our lives.

What specific kinds of autism research (if any) do you see as harmful? What kind is worth pursuing?

I think any research that is biased is potentially harmful. It is this kind of research that can result in stigmatization and the perpetuation of false stereotypes. For example, there are some studies and books that could be classified as being part of the Cassandra movement, where personal traumas in neurotypical–autistic relationships are generalized and extrapolated from. This is an example where qualitative work, when driven by personal biases, can lead to very damaging research.

But the way even great research is interpreted can also be harmful; when any research is taken as absolute fact, that is problematic. Psychology is still in its infancy, and most research will be outdated, superseded, or otherwise expanded on within the next few years. I prefer to look at studies that are seminal (i.e. of great importance or influence) or from within the last 5 years if possible.

In addition, it is important to add qualitative research, which is the lived experience. For example, a statistic like 70% suicidality among autistic females is horrifying, but it is speaking with autistic females about their experience of that that enriches our understanding of what it is to be autistic. Just the statistics tend to overlook such nuances.

A member of our Embrace ASD Community on Facebook eloquently expressed the importance of combining quantitative and qualitative research, as well as our mission with Embrace ASD. He says:
It [EmbraceASD.com] is the best resource on the internet about autism and Asperger syndrome I’ve ever seen. Nowadays, as much as it seems that awareness increased towards a better apperception of the autism spectrum and those within it, it’s imperative to remind oneself that most resources geared towards research and the aforementioned awareness are managed/created by people who do not experience it firsthand, i.e: neurotypícal parents, psychiatrists, etc. and therefore a lot of misinformation, given that although one can have wider exposure to information, said information and approaches on using it can be severely misguided, and/or misused, leading to a lot of what essentially can be summed up as a lot of snafu, for the lack of a better descriptor at the present moment. Also, said raised awareness suffers from people using the autism spectrum in partisan and mendacious ways, to take advantage of certain social phenomena that gravitate towards self-serving victimization. Humans haven’t reached true acumen (and likely never will) of the resources they have. With all that said, I believe to be important that those in the spectrum can communicate with those who aren’t, aiming to generate impartial comprehension of the subject at hand. I’ve been in Quora for nearly three years now and Martin and Natalie are two of the most knowledgeable people on the subject of Asperger’s syndrome and the spectrum in general, that I’ve known. They give relatable accounts, their approach should be paramount in generating new perspectives, and it is already, to a certain extent.

You mention using “the plasticity of the brain to help the people with achieving their goals.” Are there periods in life where the brain is more malleable than others? Are there any common misconceptions about brain plasticity?

One of the things people were unsure of until recently was if the brain grows new neurons past a certain point in life. The mystery has been solved through Carbon Dating, and yes indeed we do grow new neurons throughout life.

In 2018 MIT scientists discovered the fundamental rule of brain plasticity: when one synapse strengthens, its neighbors weaken. What I think people underestimate is that everything—every choice, experience, and thought—shapes our brain. The thing about making changes in the brain is that you have to very consciously work at it; you have to keep doing a particular thing (i.e. practice) in order to strengthen the synapses involved with that activity, and the previous way of operating will weaken. It’s the wolf you feed that grows stronger. So I think it is a good idea to make a conscious review at night of what went well, and what did not, and plan the next day to work toward strengthening the habits you want to increase.

Brain plasticity does not decrease with age. That said, as we age, we have a harder time filtering out irrelevant information, according to a study in 2014. So it is critical to choose what you want to focus on to avoid replacing relevant information with irrelevant information. 

What mistakes do well-intentioned neurotypical autism advocates make?

The largest error is assuming they understand us. We know that autistics are very different from neurotypicals, more so than individuals from different cultures. So the biggest thing I see is misinformation, because neurotypicals process things through their view of the world, and so there is always the risk they will subconsciously impose their views and values on us, and interpret autistic behavior through a neurotypical lens.

One example is the idea that we are like introverts. Introverts have a system that is very sensitive to dopamine so they do not need much social interaction to feel rewarded. We have a dopamine system that functions differently so we do not get dopamine for social interactions. Think of it this way, an introvert is holding a cup and a couple of drops fill it. The autistic is also holding a cup, but nothing goes into it, and we are wondering what the neurotypical is getting from the social interaction. Neurotypicals think we just need alone time. But unlike the introvert who, despite needing a lot of alone time still gets rewarded from social interaction, we tend to get rewarded from pursuing our special interests instead. It’s not like autistic people lack a social world necessarily, but in our experience social interaction is a means to exchange information and learn—we would rather not have social interaction for the sake of it, and especially not small talk.

What are some common indicators of autism in undiagnosed adults? Are there unique supports needed for newly-diagnosed adult autistics as opposed to those who have grown up with a diagnosis?

I find that many autistics who find me through Psychology Today come to me and tell me that they have not been able to find a therapist on the spectrum. It is lovely to work with autistics as I obviously relate very well to them.

There are a few main indicators:

1. Social differences (this tends to be a preference to not go to places where people engage in small talk);

2. Communications differences (this one is easy to miss when we are looking at ourselves because all people apply their way of thinking to others, so you are looking for things where you interrupt or speak a lot, or speak in an overly formal way, or about specific subject matter only);

3. Preference for routine, a dislike of a change in one’s day, and something you like better than small talk and socializing, and which you would be upset about if you could not pursue it.

4. Sensory differences (if the person avoids places with a lot of noises, lights, or textures, and is prone to sensory overstimulation).

Beyond that, there are quite a few indicators not mentioned in diagnostic manuals. Martin and I are planning on writing a post on atypical diagnostic criteria for autism, because we identified quite a few. In principle you can deduce whether someone is autistic from the way they walk, stand, and move. Of course you would look at a cluster of behaviors and experiences to become more confident it is autism you are observing, rather than a different neurological condition.

Given that so many autistic adults speak about what a relief a diagnosis is (even later in life), if someone suspects their spouse, parent, or other adult friend might be on the spectrum, should they consider discussing it with them, or is this inappropriate? Are there any special considerations or best practices to follow in this situation?

It really depends on how open that person is, as well as their level of understanding. People tend to be okay with me telling them when their spouse or child is autistic, because they see that I am successful in my career, I have successful relationships, I have done a good job with my kids, and they see me as a sort of walking encyclopedia who is non-judgmental and deeply empathetic. I think that seeing that we can lead successful and happy lives makes it easier to accept.

But for many people, until we have cleared up what autism is and is not, it feels like a very bad thing for them to have. Many people who I have come to know who are autistic are quite depressed about it, either because their environment does not understand autism or because they grieve not having understood their own autism sooner, so they might have adapted sooner in life. But in our experience, most autistic people become a lot more positive about their condition and their capacities after interacting with us and/or reading our content, because Martin and I are positive about our own autism.

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2 Comments

  1. Reply

    I need help. My 18 yr old grandson has come to live with us because his mom and stepdad threw him out. I’ve been saying he’s aspbergers for years. They didn’t listen to me. Now he finally met some friends who love to get high on marijuana. He has extreme anxiety and depression and can’t wait to get with his friends to get high again. We helped him get his drivers license and signed him on our insurance on one car. He gives up easily and says he wants to die. He’s filling out applications for work. He has anger and meltdowns where he jumps out of the car so you can’t hardly correct him. We are in Oklahoma, he has finally succumb to going to counciling. Could you recommend a doctor. He won’t take adhd medicene which we used to call his nice pills. He says it makes him feel horrible. I need someone who can diagnose him. He made great grades in school but does not want to go to school. Help.

    • Jenna

      Reply

      I’m sorry to hear your grandson is struggling. I’m not familiar with Oklahoma doctors, but I think you’re right to try and pursue a diagnosis if you suspect autism. Is he interested in pursuing a diagnosis for himself? Perhaps the counselor that he is currently seeing could recommend one. The Autistic Self Advocacy Network https://autisticadvocacy.org/ has some wonderful resources for newly-diagnosed individuals that would help him process the diagnosis and navigate adult life. If he is resistant to a diagnosis or any of your suggestions, you might think about working with his counselor to introduce the idea or introduce him to positive blogs or forums run by autistic people.

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