Licensed Clinical Psychologist, Alex Klein, joins us this week from Oakland, California where he is both in private practice and works at the Kaiser Oakland Medical Center assessing and providing therapy to both children and adults with neurodevelopmental differences. He trained with Dr. Stanley Greenspan, Jake Greenspan and Tim Bleecker, and also with Dr. Gil Tippy and Tina McCourt at the Rebecca School, where he was a Head Teacher and Floortime Coach before moving out west for graduate school. I invited him to share his presentation from the Rebecca School DIR NYC Conference on Neurodiversity-Affirming Care.

Neurodiversity-Affirming Care

by Affect Autism | affectautism.com

Listening to Autistic Voices

The Interdisciplinary Council on Development and Learning has been evolving DIR/Floortime with the Neurodiversity Movement away from the medical model of autism that is so prevalent. While Dr. Greenspan was a psychiatrist in the medical model, he was forward thinking by focusing on strengths over what were then-considered deficits. As an Applied Behavioural Analysis (ABA) practitioner in his earlier days, Dr. Klein questioned the methodology and began to search for criticisms, finding the voices of autistic adults. This led to his passion in this area of neurodiversity-informed care. Dr. Klein says he still witnesses a defensiveness and dismissiveness around listening to autistic voices by some professionals and believes we should be more curious and reflective about their input. 

Change the System, not the Child

Rather than focusing on how the child should be performing Dr. Klein believes that we can instead focus on how parents, peers, teachers, and school administrators act towards and accept differences in their children. We can also think about how ableism plays out in systemic ways and in political advocacy, he continues, in order to change the way the world is more accepting of human differences, over changing the child. For example, when a child has an outburst, do we view this as a problem within the child where the child is deficient in some way (the medical model), or in the system that is not good enough (social model of disability)?

Meeting parents where they are at

I tend to think of Affect Autism as a bridge for parents from the medical model towards neurodiversity and the social model of disability because parents are on a journey that is a process, beginning with shock and grief moving towards accepting and supporting their child. In the weekly Virtual Parent Support Meetings I facilitate through ICDL, parents are at all different stages. Alex says that parents have the right to their feelings and it’s important to meet them where they are at, but if we talk about a diagnosis as an awful thing and as a series of deficits, that’s problematic. People are more likely to be able to name deficits associated with autism over strengths, which rarely get talked about, and that needs to change.

Language Matters

Looking at the diagnostic criteria for autism, we see things like rigid thinking and difficulty being flexible, but these can also be strengths if you instead ask a parent, “How does your child show persistence in their beliefs?” or “What does your child show a great passion for?” over “What kind of restricted, fixated interests does your child have?” Even asking, “Does your child have a high need for control?” over “Is your child controlling?” which is a subtle difference, is important, Dr. Klein insists. 

It’s also respectful to listen to autistic preferences to be called an ‘autistic person’ over a ‘person with autism’ and get rid of labels such as low and high functioning. Saying someone is high functioning can lead to ignoring challenges that the person experiences, while labelling someone as low functioning can ignore their awareness and intelligence. These labels put our children in a box and deny them supports they might need, or make gross assumptions about where and how their abilities can shine, Dr. Klein explains.

Collaboration between neurotypical and neurodivergent minds

Many, if not all self-advocates believe autistic voices should play a role in all things to do with autism, and we both believe that is essential. Dr. Klein would like to see more collaboration between autistic adults, neurodivergent adults and self-advocates, parents of neurodivergent children–many who are neurodivergent themselves, and professionals. I see this as a goal we are not yet meeting, but working towards, while society is–and specifically neurotypicals are–learning and evolving. Neurotypicals find it easier to relate to other neurotypicals and neurodivergent people with other neurodivergent people because it’s more comfortable.

Depending on a parent’s experience with autism, they will receive a diagnosis in different ways. Parents whose child gets a new diagnosis may not know a lot about autism and it initially can be extremely overwhelming because of the ableist society we live in. While being someone with neurodivergent traits who has not experienced the challenges of self-advocates myself doesn’t make me a self-advocate, my experience of raising a neurodivergent child and getting to a place of accepting, supporting and loving my child offers parents a bridge to get to the place where they embrace neurodiversity and autistic voices as well.

Neurodiversity-informed care is Trauma-informed care

Half of autistic adults surveyed had post-traumatic stress symptoms, many associated with having had ABA therapy, Dr. Klein informs us. Trauma can also be the higher rates of bullying or very common sensory assaults in autistic children. When autistic children can’t inform us about their sensory experiences, we may not realize the trauma we or others put them through. Just learning about the history of how autistic people have been treated in the past can inform us about trauma they have experienced.

Apply an Intersectional Lens

Next, Dr. Klein talked about how important it is to apply an intersectional lens around issues of autism, race, gender, and other identities. He pointed out that black and brown children are diagnosed later and often misidentified, in a negative light, there are higher rates of assault in girls and women on the spectrum, women face more pressure to hide their autistic traits, and there is a high overlap of transgender, gender, non-conforming and autistic identities.

Seeking the ‘why’ behind behaviours

It is a pet peeve of Dr. Klein’s when there is a hyper focus on what a child did instead of wondering why the child did it. Was it due to a sensory challenge or stress that made a child throw something at another child or meltdown? The implication is that the child is in control and at fault or that they are seeking attention, and thus we should ignore it. This is not in line with a neurodiversity-affirming approach, nor a developmental approach! 

Dr. Klein likes how Ross Greene explains it in The Explosive Child, saying that all kids want to be ‘good’ kids. Let’s focus on the ‘why’ and ask what was happening in the environment to make that occur. What was the trigger? How can we speak to the child differently? I added that Dr. Stuart Shanker talks about this in Self-reg as well: stress behaviour that occurs in all children, not just children on the spectrum. There is starting to be a move towards developmental approaches, thankfully, but we do still live in a very behavioural culture and most professionals in the autism field are still largely behavioural in their approach.

Understanding Anxiety and PDA

Next, Dr. Klein tells us about Pathological Demand Avoidance, or PDA. Harry Thompson is the author of The PDA Paradox. PDA is a profile on the autism spectrum that is not well-known, Dr. Klein explains. Even the name is a bit stigmatizing with the word, ‘pathological’. He prefers to say ‘Extreme Demand Avoidance’ or ‘Demand Avoidance Profile’. It gets at the role of anxiety and the need for control he spoke about earlier that kids experience in response to demands placed on them, whether it’s getting ready for school, going to bed, or any request. 

Dr. Klein shares that this is an important profile to be aware of because many therapists use behavioural techniques, but these don’t work at all with PDA children and can in fact be very traumatic. Understanding this hyper profile is so important to a neurodiversity-affirming approach because it can help us support the family and those who interact with the child to understand it. It can also inform what professionals will recommend for the child, so they don’t increase the anxiety.

Rebuild Assessment Practices

This relates to Dr. Klein’s next point about rebuilding assessment practices, adding to what we discussed earlier. Not only are wait times for referral to diagnosis to services too long, but the questions you asked need an update. Questions like, “Does your child use toys inappropriately?” or “Does your child speak in an odd tone or matter?” are judgment-laden ways of putting it, Dr. Klein asserts. Who decides what is inappropriate or odd? What about, “How does your child show excitement?” versus, “Does your child flap their hands in a weird manner?

We can reframe it away from ‘something being wrong with your child’. Dr. Greenspan was always far more concerned with what a child was passionate about and what they looked like at their best. Also, in assessments there can often be dismissive statements about parents’ concerns when instead they should be valid and addressed, Dr. Klein says. He’s also seen diagnosis denied based on stereotypes such as if a child has and seeks friends. This is inaccurate.

Another thing to keep in mind is that many autistic children try to mask their autistic tendencies which takes up so much effort and energy. This is why some might make it through their day at school, then break down when they get home. By masking they can be labelled as ‘high functioning’. These labels are harmful as they take away from our concept of moving up and down the developmental ladder and the needs for support in some areas despite their strengths in other areas. 

Assessment as an Opportunity

Dr. Klein reiterated the need for change in the assessment process where professionals can focus less on deficits and more on compassion and understanding. Explaining to families about their child’s sensory processing profile can help facilitate this compassion and provide understanding. Also, he continued, this should be extended to the child. Helping the child understand their own sensory systems and telling them about their diagnosis gives them better understanding and self-compassion as well. Finally, there should be more of a collaboration over the expert as the know-all and the parents as the followers. 

Tell your Child they are Autistic

Dr. Klein says that there are many variables to consider in how you can tell their child they are autistic. It first and foremost depends on where the parents are on their acceptance and understanding, but also where the child’s development is at and their level of understanding. He has had an 18-year-old who was diagnosed at age 5 ask him, “Why didn’t anyone tell me I was autistic?” and that it would have helped his understanding of so many things. Dr. Klein has nothing but compassion for parents but by not telling them, it implies it is something that needs to be hidden, or is shameful, which is not a healthy approach.

Dr. Klein points out that the child usually finds out anyway, and telling them gives parents an opportunity to talk about strengths and challenges. It will help the child understanding themselves and most importantly, learn how to eventually advocate for themself. 

The word ‘autism’ does not have the same stigma for the child as it does for the parent.

Dr. Alex Klein

Rethinking how we support autistic people and their families

Our goal should be to promote the well-being and happiness of our children and to support them where necessary. It is not to make them look neurotypical, which is harmful, doesn’t work, and the opposite of accepting the child for who they are. We want to value these different ways of being and socializing, Dr. Klein states. 

We also need to appreciate the regulatory purpose of self-stimulatory behaviour, or ‘stims’, where a child might flap their hands in excitement and stay away from therapies that discourage these behaviours. No autistic people say that they wish they’d have stopped their ‘stim’ behaviour or pass better as non-autistic. They seek acceptance, for people to presume competence and address stigma and isolation, to listen to their viewpoints in therapy, and accommodate sensory sensitivities.

Social skills and the Double Empathy problem

Damian Milton’s Double Empathy Problem paper demonstrated that autistics communicate and socialize with each other easier than with neurotypicals and vice versa and that the solution is not about autistics conforming to neurotypical standards, but for us to create more acceptance of differences and neurodiversity. I brought up the Autistic Self-Advocacy Network GALA’s 2020 Ask a Non-Autistic Person Panel where the panelists gave numerous examples of how neurotypical customs and communication can be construed as deficient. It was humourous and entertaining, but carried this serious message. Dr. Klein says we want to be critical of assumptions we have about neurotypical behaviour.

History of Terrible Treatment

Traditional autism therapies that focus on compliance are very problematic because we want our children to be able to say “no“. Dr. Klein also says autistic people must have input into the design and goals of therapy, which gets into their rights for self-determination, he asserts. We need to consider what they want, not what we want. We would never to do this to neurotypical children. Even after my son’s diagnosis when I expressed an interest in DIR/Floortime, the professionals involved told us we should go with ABA because our child needed to follow adult direction. Dr. Klein said our choice for Floortime is what should have been explored instead.

DIR/Floortime

DIR/Floortime lets the child lead, which is a huge contrast to Applied Behavioural Analysis (ABA) therapy. Floortime takes into account individual differences, including the sensory profile and the caregiver’s way of interacting with the child to facilitate regulation and focus on the environment rather than on changing the child. Floortime also focus on the emotional life of the child, not just on surface behaviours, Dr. Klein adds. 

A Focus on Strengths Dr. Klein remembers the case studies with Dr. Greenspan about a child’s ‘stim’ behaviours that practitioners were pondering and how he said to embrace the child’s interests and what we consider idiosyncracies. If they want to talk about the video game Minecraft and nothing else, let’s jump in! Let’s tune in to their world and get the gleam in their eye and share joy together. That is what Dr. Klein remembers Dr. Greenspan focusing on. He wanted to foster the child’s initiative and entice the child to join a shared, joyful interaction rather than directing the child. We focus on strengths. That is how we support and promote acceptance, which leads to better relationships and better mental health.

Resources

Here are a few resources that Dr. Klein suggests: 

This week's PRACTICE TIPs:
  1. Take a few moments to reflect and consider your perspective around your child’s differences and the language you use in front of your child about them.
  2. What strengths does your child have that might have traditionally been characterized as a challenge? How can you co-regulate in those moments?

For example: If your child persists and won’t let something go, you can say, “I love your determination! You really want to make this happen. Let’s figure it out together.

Thank you to Dr. Alex Klein for sharing his NYC DIR Conference presentation with us on this important topic! If you enjoyed and found it useful and helpful, please do share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Also stay tuned for next week’s podcast where Dr. Ira Glovinsky and I discuss Lisa Feldman Barrett’s brain research on emotions that a viewer pointed out to me. It should turn a few heads, indeed, busting myths we’ve held about emotions and our brain! 

Until next week, here’s to affecting autism through playful interactions!

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