Why I Don’t Recommend Floortime

ableism, Autism, Books, Disability, Infodumping, Neurodiversity, Parenting, Writing

In many conversations about autism therapies, I’ve seen Floortime recommended as an alternative to ABA (Applied Behavioral Analysis). I’ve frequently spoken up in those conversations to caution people about Floortime, giving my elevator pitch for why I don’t recommend it. That elevator pitch/TLDR version goes something like this:

Though the real-time practice of Floortime can be a much kinder therapy with some aspects that can be beneficial to autistic children, the core concept and underlying philosophy are still highly neuronormative (holding neurotypical standards as the norm), biased against autistic development as equally valid, and include some outright harmful techniques.

I’ve long wanted to write a full blog post reviewing Floortime, because my critique is a bit nuanced and I completely understand why people would find Floortime appealing based on a cursory description of the practice. I’m also guessing that people have seen or participated in Floortime sessions that seemed innocuous at worst and maybe even wonderful at the time, because I bet a lot of people are only partially adhering to the method.

What is Floortime?

If you haven’t heard of Floortime before (also known as D.I.R./Floortime, its trademarked name), it is a therapy for children with developmental disabilities that was developed by child psychiatrist Stanley Greenspan in the 1980s and 90s. Floortime builds on play between the child and their parents or primary caregivers to strengthen the child-caregiver relationship, support the child’s emotional development, and through the method, boost the child’s overall development.

The Floortime website has a good outline of their methods in “Greenspan Floortime: What It Really Is” by Stanley Greenspan and Jake Greenspan. (Stanley passed away in 2010, and his son Jake now runs the Floortime Center; for the purposes of this post all future references to Greenspan will refer to Stanley). I will pull quotes from this article below as I dissect this method and parse out the good, the bad, and problematic.

How is Floortime Different from ABA?

Though there is much that is ableist, neuronormative and specifically anti-autistic in Greenspan’s work, I want to acknowledge that there is also a good deal of empathy and sensitivity, and that there are some concepts in Floortime worth extracting and preserving.

DIR/Floortime is commonly perceived as a kind of anti-ABA by people who are looking for a kinder alternative to ABA – and for good reason. When Greenspan was studying to become a child psychiatrist in the 1960s, he was learning mainly about behaviorism, particularly the work of BF Skinner; behaviorism reduces human behavior to little more than a set of responses to stimuli, and Skinner contributed the idea that thoughts and feelings could also be controlled via reinforcement and/or punishment. This “operant conditioning” technique was the basis for ABA.

Greenspan felt this was the wrong way to approach supporting children – he felt that the emotional life of the child was more important than their behaviors, especially in their relationship with their primary caregiver(s). So to the extent that his work is a reaction to, and counter argument against, the practice ABA it is an alternative in a real way.

Ivar Lovaas, the founder of ABA, believed that autistic children were literally not people, and that shaping their behavior by force was the way to make them into one: “One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.” (Text from Psychology Today interview, 1974.) To Lovaas, the autistic child was a completely different sort of being than a typical child – something less, something incomplete.

Stanley Greenspan, by contrast, asserts that all children fundamentally have the same emotional lives and psychological needs. “They may have a disorder or a set of problems, but they are not the disorder or set of problems.  They are human beings with real feelings and real desires and real wishes. […]The ultimate aim is to form a close relationship. It all begins with the relationship between the caregiver and the child.” (Emphases from original text.) If anything, Greenspan minimizes children’s diagnoses too much, failing to regard neurodiversity as a basic truth of being human, but certainly his views on children are far more humane than those of the founder of ABA.

Where Does Floortime Go Wrong? 

According to the Greenspans,

“Floortime has three steps for reaching these goals, and they all need to work together for Floortime to be successful. They are: 

1.     Following the child’s lead and joining the child’s world,”

I’m fine with Floortime practice through step one. And I think that in the real world, people often only take it as far as this first step. So, to the extent that people are doing Floortime incorrectly and only joining the child’s world, I approve! In fact, I’ll circle back around to highlight the positives in step one and outline the element of Floortime that we can steal or separate from the rest.

The problem, of course, is that Greenspan himself takes pains to emphasize that step one alone is NOT what Floortime is about, that it hinges on following through with steps two and three –

“Now we are talking about the real skill in doing Floortime, its real infrastructure.

2.     Pulling them into a shared world, often by challenging,
3.     Helping them master the Developmental Stages by expanding on their interest.

“We do not simply stay in their world following their actions.”

This is where Floortime goes off the rails.

[Note: I am going to use the word stimming in this section, for brevity’s sake and as a reclaimed word, with acknowledgment that many autistic people do not want to reclaim it or use it.]

“Floortime’s second step ‘challenge’ can be used in two different ways. One is to start the initial interaction with a child when they are ignoring you. The other is to expand the interaction once you have their attention. In this case, it’s to solve the avoidance problem.” (Emphasis mine)

For autistic children especially, Greenspan puts an almost tyrannical emphasis on neurotypical social skills as developmental goalposts. Where a child might simply desire a bit of solitude or be enjoying a deep absorption in a particular activity or interest, Greenspan sees “an avoidance problem.”

In his book The Child With Special Needs, which I read a few years ago, Greenspan goes into quite a bit more detail on this aspect of the Floortime philosophy. While he does not seek to extinguish stimming or “autistic behaviors” such as hand flapping, the way ABA does, he does insist that such behaviors should always be used by caregivers to initiate social play. He states unequivocally that autistic children should never be allowed to stim alone, and in fact should never be allowed to be alone for any significant period of time – they should be pulled into social interactions as much as humanly possible (possible for the caregivers, that is).

This is where my critique of Floortime may get tricky or nuanced in a way that is confusing for non-autistics who haven’t tried – or don’t even desire – to de-center neurotypical social skills in their minds. It’s not that Greenspan views autistic stimming as bad or something to crush out of the child – as Lovaas did – it’s that he can only see solitary activities as developmentally regressive.

From the Floortime website: “There are different types of ways to create “downtime” if your child has autism, notes Dr. Greenspan. “If you have a child with autism that is capable of reading a book, that’s terrific; give them regular down time. If the child is capable of doing a crossword, that’s great; give them regular downtime and then balance it through the day. If your child with autism is only capable of self-stimulatory play (self-stimming) where they’re rubbing a spot on the floor, or lining up their toys, or self-injurious activities where they’re banging their head, we want to minimize that kind of downtime because it’s destructive,” urges Dr. Greenspan.”

As an example of neurotypical bias, the above paragraph is excellent. Lumping in self injury with the pleasure of lining up one’s toys is insulting to autistic children – oversimplifying their emotional and behavioral complexity to the point of nonsense. And elevating interests like crossword puzzles or reading is nothing more than ableist, anti-autistic bigotry.

I happen to strongly agree with Greenspan that a trusting, emotionally secure relationship between an autistic child and their parent(s)/caregiver(s) is the basis of the child’s development. But unfortunately, because Greenspan is unable to imagine either  non-typical social-emotional bonding or non-typical healthy child development, his prescriptions for how to achieve a healthy parent-child relationship and how to support the child’s development are inherently anti-autistic and counterproductive.

So even though Greenspan doesn’t set out to extinguish autistic behavior intentionally like ABA does, this happens as a serious and unavoidable side effect of Floortime, because its model for “emotional healthy development” excludes most forms of autistic relating and bonding and social skills and behaviors.

To put things even more simply, solitary activities and parallel play, two pillars of autistic wellbeing, are NOT part of Floortime practice or philosophy. Parallel play is permitted only as a brief gateway to directly interactive social play. Any therapy that seeks to override normal healthy autistic activities is not a respectful, supportive therapy for autistic children.

How is Floortime sometimes similar to ABA? 

Because Greenspan’s child development model is neuronormative, at times it resembles some of the ugliest aspects of ABA therapy, which traditionally states “normalization” as a goal (ABA practitioners are now savvy enough to avoid such off-putting terminology, but that end goal is still very much baked into the cake.)

Greenspan teaches parents an array of manipulative techniques meant to “challenge” children – really what this is about, of course, is pushing them to use more neurotypical social skills to get what they want.

“Sometimes we can start the interaction by doing something to the child that we know they enjoy, especially physical activity such as a little tickle game or a horsey ride.  Children love to get on daddy’s shoulders and move a lot.  But then how do we get the child to do to us?  As soon as he is up on our shoulders, he has to gesture or make a sound to show us that he wants the horse to move more or he wants the airplane to go again.  We challenge the child to take initiative.”

Among the manipulations he recommends is “playing dumb,” to push the child to use more neurotypical social communication:

“Now we have shared attention, engagement, purposeful action, and some problem solving: real thinking. Words, “truck, truck, move,” often follow soon. But there’s more to be done. We begin to give his choices, expanding the play:  “Do you want to move it into the tunnel or the house?”  He goes, “Ha, ho” indicating “house” and points.  We ‘play dumb’—another type of challenge—and ask if he wants the truck in the house or on our head. He laughs and points to the house again.”

And of course, a central tenet of Floortime – step three – is to use the child’s interests to push them to “master the developmental stages,” which of course means neurotypical stages. ABA may exploit a child’s interests in harsher ways, but they share this common practice of using those interests as levers, as manipulative tools to employ in the work of teaching an autistic child to imitate neurotypical social skills better.

“With the child who wants to go out the door, we make it into a 10-step interaction rather than one.  “Well, mommy can’t open the door. Get daddy.”  The child pulls on daddy, and daddy has a hard time too.  “Can you show me? Do I turn or pull the knob?” and the child shows you.  The child can make a sound to make the door open and so forth, until you get 10 circles of communication rather than one of simply opening the door.”

This advice of playing dumb and manipulating the child to “expand” their communication is one that he emphasizes as especially important for autistic children, whom he says have the most difficulty in sustaining long chains of social interactions. This too is neuronormative in that it devalues the autistic child’s natural communicative abilities and needs – to get their message across in a minimum of words or gestures, to simplify social interactions and conserve their own resources.

But even worse, I feel that it sadly undermines the stated goal of building a trusting relationship between the parent and child. Intentionally frustrating a child does not build trust – quite the opposite. And I believe Greenspan greatly underestimates the ability of young autistic children to pick up on when they’re being manipulated, when a parent is “playing dumb,” and when a parent is essentially pretending to play and enter the child’s world while barely concealing a hidden agenda to push their “development.”

We are always trying to broaden the child’s capacities in terms of their current milestones — strengthening and broadening those and introducing the next one.  If they are a little purposeful, we want them to be very purposeful.  If they can open and close three or four circles of communication (back-and-forth’s with gestures or words) we want to get it to seven and eight and then to ten and twenty until we get 50 or more.

“Greenspan Floortime is for all the time.”

What do children learn when they are constantly being pushed to do more and more? That they are never quite good enough in their parent’s eyes.

Ask Me How I Know

 

Though I still feel some shame admitting it, I take a hard line against Floortime now because I know from personal experience the harm it can do. A few years ago, on the advice of an occupational therapist, I not only read one of Greenspan’s books, I paid almost $100 for one of his online courses. (Please please do not fall for this tremendous ripoff, which consists of a series of poorly produced videos covering material that you can learn easily for free elsewhere.)

I tried doing Floortime at home with my son, but not for long, because even though he was only about 3 or 4 years old at the time, he very quickly caught on to my scheme and stopped playing with me altogether. It took considerable time to rebuild the trust he lost in me when I tried approaching every opportunity to play with him as a therapy session – and worse, he hardly had a chance to play by himself with me popping in to intrude several times a day!

And that’s not even touching how intensely draining it was for me as an autistic person to attempt to be socially engaged all the livelong day. If I couldn’t stand it and I’m an adult who had had 30+ years experience pretending to be neurotypical, I can hardly imagine how unbearable Floortime is for an autistic child!

What Can We Borrow and Steal from Floortime?

However, as mentioned above, I do feel that there are some positive, beneficial elements of Floortime that can be extracted and preserved.

All parents of autistic children would do well to focus on building up their relationships with their children – establishing and reinforcing trust, connection, and emotional security. If parents of newly diagnosed/identified autistic children feel confused or overwhelmed by questions and information, I think they would do quite well to make that relationship with their child a sort of lighthouse in their family life. If a parent feels completely unsure of how to proceed with issues of therapy and education and so on, I think it would serve them well to hit pause on all of that and just concentrate on making sure their child is able to trust them and be safe in their care.

If I could be Floortime Noncompliant and disobey Greenspan’s instructions to follow through with steps two and three, I could endorse Floortime Step One as a therapeutic practice for parents of autistic children. At some points in his books and videos, Stanley Greenspan is almost poetic in the way he urges neurotypical parents to join their child’s activities, describing the way what might appear at first to be “nothing” is almost surely something to the child.

The end goal of using a child’s interests to further the therapy agenda is wrong, but the way of getting there can and should be an end in itself: join in, if your child is agreeable to it. Not all the time, not against their will, but slowing down and trying to see what they see, hear what they hear, feel what they feel, appreciate what they love, is worth it. If you’re neurotypical perhaps you’ll never fully understand what’s so captivating and beautiful about the fringe along a blanket’s end, the spinning of a ceiling fan, but when you try, your child sees that what matters to them… matters. It’s not silly or bad or nothing. And that is such an important cornerstone of a trusting relationship with your child. Especially for autistic people, who love what we love so deeply, having our interests validated by people we care about is one of the best, most fundamental supports we can receive.

 

diversity is beautiful cartoon

Diversity is Beautiful

ableism, Autism, comics, Disability, Education, Infographics, Neurodiversity

One of the most frequent questions I hear from parents of autistic children is, “how do I tell them they are autistic?” They want to explain autism to their child in a positive way; to frame the information as something that empowers.

My favorite way to approach conversations about autism and other forms of disability, especially (but not only!) with children, is rather than singling out the autistic or otherwise disabled child, begin with the larger context of diversity.

Diversity is, after all, an essential ingredient in a thriving natural environment; it is valuable for its own sake.

What I love about this approach is that it de-centers any one “typical” way of being, unlike the old way of explaining autism as a brain with a set of deficits that makes it something other than normal. There is no one correct or even best kind of brain, any more than there is one correct or best kind of dog or bird.

I have this “Diversity is Beautiful” cartoon for sale in my shop, on posters and mugs and a bunch of other cool products. If you choose to purchase something from there, your support is greatly appreciated! But I am also offering free printable PDFs (see below) so that anyone may use this information. As with all of my infographics, you have permission use these for personal, educational, and any other not-for-profit purpose, retaining credit to me (and any other sources listed in my graphics).

diversity is beautiful cartoon

The Simple version of Diversity is Beautiful gives you more space to create your own accessible explanations for the concepts in the image. I recommend this one for audiences with less complex receptive language and/or reading skills.

Image description: title is “diversity is beautiful.” First row of drawings shows a variety of animals, with the caption “diversity in the animal world.” Second row shows an assortment of kids: from left to right is a person with a limb (arm) difference, person using a wheelchair, person with no visible disability, person signing “hello,” person using forearm crutches, person wearing glasses, person using a white/probing cane. Caption is “diversity of people.” Third row shows four heads with smiling faces and on foreheads are drawings of multicolored brains, caption is “diversity of human brains.” ©Erin Human 2017

Printable PDF:
Diversity is Beautiful (Simple)

"diversity is beautiful" cartoon w explanations

The version called Diversity is Beautiful (Explained) has a more lengthy explanation for each form of diversity shown. This is a nice choice for anyone who does not wish to create their own script, or would like people to be able to access the image’s concepts independently (for example, as a poster in a school classroom).

Image description: title is “diversity is beautiful.” First row of drawings shows a variety of animals, with the caption “diversity in the animal world / there are millions of different kinds of animals – more than we can count!” Second row shows an assortment of kids: from left to right is a person with a limb (arm) difference, person using a wheelchair, person with no visible disability, person signing “hello,” person using forearm crutches, person wearing glasses, person using a white/probing cane. Caption is “diversity of people / people come in a great variety of shapes, sizes, genders, abilities, and appearances – we are all unique!” Third row shows four heads with smiling faces and on foreheads are drawings of multicolored brains, caption is “diversity of human brains / no two brains are alike, but we have names for different types – like ADHD, autistic, dyslexic, typical, & more!” ©Erin Human 2017

Printable PDF:
Diversity is Beautiful (Explained)

 

 

 

Neurodiversity 101

Autism, Disability, Infographics, Neurodiversity

neurodiversity 101

Neurodiversity 101

It’s a big word for a simple idea!

neuro/brain [image of head with brain]
+
diversity/range of different kinds [image of landscape with trees, water, animal]
= a range of different kinds of human brain

neurodiversity is not
– a belief system
– a personal opinion
– a political position
– a theory

by itself, it is just a neutral fact of human life:
neurodiversity exists!

[image of text/speech boxes]
more and more, people are saying they
are pro-neurodiversity
support neurodiversity
celebrate neurodiversity
those are personal opinions; people may agree or disagree that neurodiversity is a good thing, but that it is REAL is undeniable.

bonus neurodiversity vocab words:
neurotypical: having the most common, typical kind of brain
neurodivergent: having any kind of brain that is not neurotypical
neurodiverse: having a variety of people with neurotypical and neurodivergent brains; refers to a group or group environment, such as a family or workplace

© Erin Human 2017
for more information:
erinhuman.com
autisticfamilies.org

This infographic also comes in a printable PDF:

neurodiversity 101

Autism Acceptance 101

Autism, Disability, Neurodiversity, Parenting

Autism Acceptance 101

Image is an infographic with the following text:
guide for parents
Autism Acceptance 101
Autism Acceptance sounds simple enough, but what does it really mean for parents of autistic children?
[photo of a red tricycle on a sidewalk]
Autism Acceptance is NOT:
– ignoring challenges for parents or children
– giving up on your child or having low expectations
– pretending that life is all unicorn farts and rainbows!
[photo of a smiling child on a swing]
Autism Acceptance IS:
– accepting that autism is an inextricable part of your child
– acknowledging your child’s unique challenges & needs
– providing supports & helping your child thrive….
as an autistic person!
Erin Human
facebook.com/theeisforerin
erinhuman.com
This infographic also comes in a printable PDF:
Autism Acceptance 101

How many people are affected by ableism?

ableism, Autism, Disability, Neurodiversity

[The following text is also a transcript for the featured image description]

How many people are affected by ableism?

Everyone is affected by ableism.

* At any given time, about 1 in 5 people worldwide has a disability.

* People who were not born disabled, or aren’t currently disabled, may become disabled later in life.

* Some people who do not identify as disabled or recognize themselves as disabled are in fact disabled and directly affected by ableism; for example, people with psychiatric disabilities such as depression and anxiety.

* Disability Rights are highly intersectional; civil rights issues for women, people of color and LGBTQ+ people are intertwined with disability issues. Disability rights also overlap with issues such as healthcare, education, poverty, and more.

[sidebar has an image of a caution sign and the following text]

CAUTION

Descriptions of ableism as a disorder is this series are satirical and not to be taken literally.

Ableism is not a form of mental illness or psychiatric disability; in fact, blaming bigotry or prejudice on mental illness or any other disability… IS ABLEIST!

Intro: Ableism Awareness Month

Part 1: What is ableism?

Part 3: What causes ableism?

Part 4: Is there a cure for ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

What is Ableism?

ableism, Autism, Disability, Education

[The following text is also a transcript for the featured image description]

What is ableism?

Ableism is a cultural disorder that can affect people’s language and communication skills, social relationships, and other interpersonal behaviors.

Symptoms may include:

* Deficits in respectful, disability-inclusive communicate skills; may include the repetitive use of language that discriminated against or excludes disabled people, and a failure to provide communication access to disabled people.

* Deficits in social-emotional reciprocity with disabled people, ranging (for example) from lack of empathy toward disabled people to failure to include disabled people in social activities; in severe forms, may include abuse, homicide/filicide, and/or total apathy toward the abuse of disabled people.

* Restricted patterns of discriminatory behavior, for example: insistence on segregating, mocking, and/or abusing disabled people; unusual interest in “inspiration pornography” that objectifies and demeans disabled people, etc.

Ableism is any form of discrimination or negative bias toward disabled people or disability in general.

Intro: Ableism Awareness Month

Part 2: How many people are affected by ableism?

Part 3: What causes ableism?

Part 4: Is there a cure for ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

 

April is Ableism Awareness Month

ableism, Autism, Disability, Education, Neurodiversity

For several years, autism organizations led by non-autistic parents and professionals have focused on Autism Awareness in the month of April.

Autistic people have pushed back on the Awareness campaigns (and their usual pathologizing, othering frameworks) by asking for less talk of awareness and more acceptance for autistic people of all ages.

This year I was inspired to flip the old script with a new kind of Awareness campaign:

This April is Ableism Awareness Month

Join me in the coming weeks as I roll out some basic information and awareness of this epidemic of ableism, including examples and symptoms, treatments and alternatives, and more.

Part 1: What is ableism?

Part 2: How many people are affected by ableism?

Part 3: What causes ableism?

Part 4: Is there a cure for ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

5 Supports That Changed My Life

Autism, Identity, Neurodiversity

It’s been over a year and a half now since I first began to realize I was autistic, and what originally kicked off that process of self-discovery was that the demands of ordinary life were beginning to outstrip my personal resources, and I needed to know why. I’ve since heard this described by autistic people in different ways, from “rolling burnout,” to “my workarounds were no longer working,” to Cynthia Kim’s phrase “playing life in hard mode.” I myself often described myself as being in survival mode on a daily basis, and my therapist once said that I needed to get “out of the basement level of functioning.”

When I sought a diagnosis in spring of 2015, there was some magical thinking involved in my expectations for psychological diagnosis and therapy. My goal was to go from being a flailing, falling-apart passing-as-neurotypical person to a thriving autistic person, which I still think is an excellent goal. However, it doesn’t happen by magic and as it turns out my psychotherapist was not the Blue Fairy.

bluefairy

Image is from Disney’s Pinocchio: The Blue Fairy points a magic wand at the nose of Pinocchio the puppet, who is sitting on a shelf amongst pots of paint.

It’s been a gradual, trial-and-error filled journey, but I’m finally getting to a place where I know what kind of supports I need in order to thrive, and can access them. By no means should anyone assume that what works for me will work for them, which I’m sure my readers already understand. But here are some of the supports that have been integral to my ability to cope with ordinary life without feeling like I am overdrawing my energy bank every single day. These things have gotten me out of survival mode and made me feel more like myself again.

BoseQC15

Image is a pair of black and silver Bose QuietComfort noise canceling headphones.

Noise canceling headphones. The particular pair that I own are Bose QuietComfort 15 (I asked around and was told by a few people that the older 15s are a bit better than the new 25s). This was one of the first things I did for myself after getting diagnosed with autism: I stalked eBay until I found the make and model I wanted for a good price. They are expensive, but if you are noise sensitive and can afford to splurge or save up for them, they are well worth the cost ($250-300 on Amazon, I got mine for under $200 on eBay). Bose QC are high quality, comfortable, and are wireless when you use the noise canceling feature only (that runs on a AAA battery). If you want to listen to music with these you have to use a headphones cord. Bose does also make a Bluetooth enabled pair so you can listen to music wirelessly – those are called SoundLink ($250-280 on Amazon).

Lately I have not needed noise protection quite as much, but for a while I wore my headphones every day, and on low-spoon days (when I didn’t get enough sleep and/or was recovering from a social event) sometimes I wore them all day long. You can still hear people talking at average volume in a room with you, so I could hear my kids and husband and do everything I needed to do – but they dampen really loud and/or high pitched sounds, and also ambient sounds like the refrigerator running, iPads playing cartoons, and so on. I didn’t even realize how much that kind of background noise was zapping my energy until it was gone. The downside of these, besides the cost, is that while they are super comfy by themselves, I have trouble wearing them at the same time as my reading glasses. So people who wear glasses all the time may have some issues with fit. Also, they are (obviously) conspicuous, and I can tell you from experience that if you wear them out in public people WILL stare.

Herebuds

Image shows a pair of white Here Active Listening earbuds in their case, a white iPhone with the Here logo on the screen, and a pair of sunglasses. The sunglasses make me laugh but I choose this photo because it shows the buds, case and app.

Noise canceling ear buds. Yes, I have noise canceling headphones AND earbuds. After I purchased my headphones I started hearing a lot of buzz (no puns intended) in the autistic community about Here Active Listening earbuds. These actually do a lot more than noise canceling – basically they are a smartphone-controlled EQ system for your ears – but I mainly use them to block sound. They started off as a Kickstarter project and now are issuing a trial run of the buds, which means you must sign up on a waiting list, and when a pair are ready for you, you receive a code in order to purchase one pair. For me this took exactly 6 weeks (plus a 2-3 days’ shipping), which seems typical from what I’ve heard. Currently a set of Here buds costs $200 but once out of the trial phase they will likely go up to $250.

I was nervous about buying Here buds because, like many people, I worried about whether they would be uncomfortable. I have small ears and many earbuds do not fit me at all. Here buds come with two or three different sizes of squishy flexible bud attachments, and yes, they fit me well. There are some times when I don’t like the feeling of them in my ears, but most of the time, they’re fine. I would say if you HATE earbuds do not get these, but if you can tolerate a soft earbud, they are pretty comfortable.

The EQ itself is very good, has powerful noise canceling ability and can be adjusted in many ways, by turning up and down the decibels, bass, treble, etc. It comes with a number of preset “filters” and also a custom live EQ setting. One common complaint is that it does not have a directional microphone; that means you can tune out everyone’s voices or tune in all voices, but you can’t tune in the person sitting across a table from you while blocking out the people behind you – though I’ve read they may try to add that feature in a future model.

My main complaint is that my Here buds are a little buggy. Sometimes I hear a buzz in the left one. And I often have trouble with trying to disconnect them from Bluetooth and reconnect within a single day – so it’s usually easier to just leave them on, and switch back and forth between a noise blocking filter like “Office” and a tune-in filter like “Human Speech” if I need to, for example, hear the kids playing in another room, and then tune out again. These issues can be resolved by resetting the buds, but that’s kind of a pain in the ass if I’m in a state of overload and needing relief. Even so, I use these quite a lot. They are less cumbersome than my headphones, I enjoy not having something on my head when I use them, and they’re so small and discreet that it’s very convenient to throw them in my bag when I leave the house in case I need them while I’m out. For anyone with noise sensitivity who doesn’t mind earbuds, I recommend them highly (more than the headphones, if you have to choose).

drugs

Stock photo of an orange bottle of prescription drugs lying on top of a notepad that says Rx. Note: these are NOT my actual pills.

Prescription drugs. This is NOT a support I am comfortable recommending to just anyone, since everyone is different and some people do not do well with medications and some choose not to take them, which is their right. However, I wanted to include meds because for one thing, it’s the truth – they have helped me immensely – and for another, this is me doing my little part to push back against ableist attitudes toward psychiatric medications. I view meds as just another support, one that people should be able to freely choose for themselves, and hopefully should be able to get help finding one that really works for them.

A thing about being a neurodivergent person, particularly one raised and socialized as a girl, is that you tend to defer to anyone in anything resembling a position of authority, even when you know they are wrong. You’re pretty sure they’re wrong. But they probably know better so maybe they are right? I won’t go into all the boring details but I took an antidepressant that wasn’t helping me, instead of the ADD med I knew I needed, for nine months, because I didn’t fully trust myself to know better than a doctor how I felt and what would be good for me. Eventually I found a better doctor and a better support.

Taking a drug doesn’t mean that I don’t accept my neurology – if anything, I am better able to appreciate the beauty of my ADD-autistic mind now that I am not scraping the bottom of the barrel for the inner resources to function. I don’t feel like someone else, I feel like my real self, the self I was before things got overwhelming. Maybe if I could move out to the seaside and live in a wifi enabled cottage and my kids were a little older and more self-sufficient or I had more help – and if life were simpler, maybe I wouldn’t need meds, but right now my environment is such that I need a little pharmaceutical support and I am not ashamed of that. Nor should you be if you need that too.

(Side note that I dislike the terminology of “attention deficit disorder” (I mean, really!) but am using it to be understood by a broad audience. I would love a better term, maybe attention divergence?)

Screen Shot 2016-06-01 at 2.25.55 PM

Image is a screenshot of my Habitica browser page: at the top left are my avatar and stats, with my party’s avatars lined up to the right. Below that from right to left are lists of: Habits, Dailies, To-Dos, and Rewards.

Habitica. Oh how I love Habitica!

When I got off the antidepressant and on ADD meds, the boost in mood was immediate, but executive functioning improvements still took more time and effort. Fortunately I remembered another autistic person I knew online had mentioned months back (when I was still too overwhelmed to even consider it) that they used Habitica to get their stuff done. I suspected that a task manager set up like a video game would be perfect for me, and I was right.

The above photo is a screenshot of my actual Habitica dashboard on my computer (I also have it on my phone but I use the desktop version more). At the top left is my avatar: yep I’m a Level 14 Rogue riding a golden lion and accompanied by a white bear cup, and proud of it. To the right of that are the members of my party, a social function you can use, or not. Below all that I let you see some of my tasks and how they’re organized on Habitica (as you can see I’m in a bit of a nest feathering phase with my to-do list).

I looooove this game. I don’t avoid or forget to check my to-do lists anymore because… it’s fun! This is another thing that I’m sure won’t work for everyone, but for me, getting a couple of pieces of virtual gold for doing the dishes feels motivating. It helps me manage my time, not stress about deadlines, and it also helps me to relax and enjoy my downtime because I don’t have to worry that I’m forgetting an important task.

downtime

Image is a photo my 4 year old took of me. In the foreground are chairs around a table with toys and a bowl on top; in the background I am seen from behind looking out through glass doors – a person with short brown hair and a gray sweater. To my right is a wooden hutch.

Downtime. This is not an app or a medication, but actual downtime. And plenty of it. Half a lifetime of “playing life in hard mode” has conditioned me to feel like I always have to be hustling just to keep up with the minimum standards of getting by. I’m aware that it doesn’t always appear as such from the outside, but I have always felt like I am working twice as hard just to do the things that everyone else seems to do with ease. A former friend once described me as “ambitious,” and at the time I was genuinely shocked by that characterization, but now I think I understand that being driven to succeed, somewhat perfectionistic, hard on myself, and religious about productivity, are adaptations I have cultivated (mostly unconsciously) in response to having an invisible disability.

But the cost of those adaptations is that I repeatedly push myself too far and crash. That worked well enough – I could hide it, mostly – when it was just me, but now I have a family, and it’s too hard on all of us for me to be crashing all the time.

So I am learning to build in lots of downtime as an essential support. It helps that my kids need this too (one of them especially does) so it’s not really an option to skip it. The actual *time* has been available ever seen we chose to homeschool, but the pressure I put on myself to “be productive” every day was still there. Additionally, getting to the point of rolling burnout meant that I never actually experienced relaxation – only crashes. There is no downtime in survival mode, only survival. So, all of the above supports enabled me to access downtime, and untangling myself from the internalized ableism that drove me to always-be-productive is necessary in order to truly relax.

(Easier said than done, I know.)

‘Cognitive Dissonance’ at NeuroQueer

Autism, Books, Neurodiversity, Writing

NeuroQueer is a very cool online journal whose editors are some of my personal heroes and favorite bloggers, so I’m honored and excited that they have published my review of In A Different Key: The Story of Autism by John Donvan and Caren Zucker. Many thanks to the wonderful Ibby Grace for making it happen!

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The press release for In A Different Key : The Story of Autism by John Donvan and Caren Zucker says that this book was “written by two journalists personally committed to widening respect, understanding, and support for the loved ones in their families – and in every family touched by autism.” I want you to keep that sentence in mind as you read my review. I want you to note that the supposed object of this widened respect is the autistic person, and remember that as you read on.

In the preface the authors lay out the premise that this book will be about parents, and that “their two main goals – to find out why their children have autism and to make it go away – remain unfulfilled.” 

#SayTheWord, Not “Special Needs”

Autism, Disability, Education, Neurodiversity

The deeper I go into autistic culture and autistic rights activism, the more I find myself pulled to align my goals, my activism, and my identity with the broader disability rights community.

There’s a social media campaign going on right now to #SayTheWord – it was started by Lawrence Carter-Long, the Public Affairs Manager for the National Council on Disability, and is an active Twitter hashtag. The word, of course, is disabled.

The importance of this campaign is driven home to me over and over again as I see people performing ludicrous and painful contortions to avoid saying it. Reminder that when I make a criticism the way well-meaning people interact with disability, I am not attacking the people (parenthetical reminder that I was immersed in ableism myself not long ago), but inviting people to think about things in a different way.

Instead of saying disabled, nice people say things like:

  • differently abled
  • handicapable (yes, really)
  • physically/mentally challenged
  • special needs

It’s that last one, special needs, that I really want to take aim at, because I believe that seemingly innocuous phrase does serious damage to disability rights.

Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when we require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on.

That’s the first problem, because access is not “special” for disabled people. It’s our right. The Americans with Disabilities Act of 1990, modeled on the Civil Rights Act of 1964, protects disabled Americans from discrimination, requires us to be accommodated in the workplace, and grants us equal access to public spaces and institutions. Other countries have laws in place to protect disability rights in similar ways.

The second problem is, the phrase “special needs” flies in the face of the social model of disability. The social model says, the disabled person’s inability to access things is due not to the disabled person’s failings, flaws, or deficits, but on the environment’s failure to provide access to the things. For example, a Blind person is not disabled because they can’t see, they are disabled because the world was set up by seeing people for seeing people and is made of many things that are inaccessible to non-seeing people.

To make a metaphor of it, imagine taking a brand new car and submerging it in a lake. The car is disabled; there’s nothing wrong with the car itself, it still does everything it’s designed to do, but it cannot operate in its current environment. If were in an environment well suited to its needs and purposes, like say a road, it would be able to do all the things a car does.

Or, take a look at this short (1 minute 26 second) animation explaining the social model – it has captions for those who have auditory processing or hearing disabilities.

So, when you say “special needs” instead of disabled, you are saying, this person needs all sorts of special things to help them do what we can do. We, the people who designed the buildings, the curriculum, the programs, the services, so that they are tailored to our needs – we don’t need anything special to access those things. Well of course!

Some people shy away from the word disabled because they feel that it’s stigmatizing. (Some people feel the same way about the word autistic.) But you don’t remove stigma by dancing around it and being coy and hush-hush about it. That actually increases stigma. Disabled is not a slur and never was; it’s a neutral description. I believe that the truth is people are not just uncomfortable with the word, they are uncomfortable with disability itself.

Disability is a normal part of human diversity; somewhere around 15-20% of the human population is disabled. Like other forms of diversity, the presence of disability in the world enriches humanity in ways that we probably can’t even imagine. Being disabled is not something to be ashamed of, and it’s not something to be scared of; it’s just a fact of life.

I #SayTheWord because I believe that only by saying it over and over again, with pride, with confidence, can we accept disability itself. Say it with me.

(Another great post on this topic is Disabled? I Am Legend! by unstrangemind. And if you are on Twitter, be sure to check out the #SayTheWord hashtag, which is full of excellent.)

buy me pizzaImage says “#saytheword / eisforerin.com / disabled not ‘special needs'” on a blue background.