Neurodiversity is for all of us.

Everyone in my immediate family has a disability. All of us are impacted differently. Some of us speak. Some do not. Some of us have hyper focus. Some have distracted focus. Some have high energy. Some have low. Some are readers and in love with collecting knowledge. Some struggle with reading and showcasing knowledge. Some are emergent communicators who are working on letter sounds and exploration.

The neurodiversity movement includes all of us.

I’ve been seeing this problematic trend, popping up in tweets and The Guardian, that writes about neurodiversity as a movement for speaking or employed autistics only. It says that neurodiversity doesn’t include those with learning disabilities or intellectual disabilities. It says that people who are married and employed cannot be impacted by their disability or understand anything about the life of someone who is neither.

None of this makes sense to me. It is a gross misunderstanding of the concept, and feels somewhat like deliberate misleading.

First, yes, the self-advocacy movement includes those who are non-speaking or who have intellectual disabilities. It is hands down my FAVORITE movement. It is one that says — yes, yes, your daughter too has rights. Yes, her communication is valuable, whether it is in sounds or gestures or hand-flapping or on her AAC device. She doesn’t have to prove herself. She doesn’t have to become literate or a math genius or dress herself. It says that she is worthy of belonging to her community, her school, her world — as she is.

And the places advocating for her inclusion? For assistive technology? For accessible physical environments? For a living wage that will ensure she has access to high-quality personal care attendants? For access to healthcare and real literacy instruction and a life that SHE designs? It’s the neurodiversity movement. It’s not the “autism mama” movement, which pushes for private day school and segregated ABA-centered settings. It’s not the ABA movement, whose assessments label her as a “pre-learner” and excludes her from even being with peers in a special education classroom. It’s the neurodiversity movement. It’s her teachers and aides who, knowingly or not, have adopted the mindset that she is who she is and their job is to help her access HER best life.

Second, there is this misconception that neurodiversity does not acknowledge disability. To me, this image is more a reflection of our cultural understanding of disability (and our culture’s unwillingness to accommodate). Over and over again, you will meet self-advocates who speak both to their strengths and their challenges, who say “I have a disability AND I am proudly autistic.”

Yes, disability can be hard, even before adding the layers of cultural ignorance on top of it. Yes, experiencing psychosis and major depression and devastating anxiety can be awful and isolating and miserable. But nowhere is there anything in the neurodiversity movement that says “you’re not included” or “this never happens”. Instead, they beg for research to be spent here, on the things that make a real difference in quality of life. They ask for researchers to look at what accommodations and medications and treatments can give people access to the life they need — rather than spending more time and money on curing autism or ABA or vaccines, again. Autistic researchers are leading the way as they research how current “treatments” often create and perpetuate PTSD. Never is the neurodiversity movement against improving quality of life. It’s about improving quality of life without having to stop being who you are. It’s about the world changing to accommodate difference, instead of individuals being expected to hide, change, or smooth over their differences.

Lastly, we cannot judge someone’s experience of their disability by what we see on the outside. I’ve seen this hurt so many children and adults, who don’t get accommodations they need or have to work so, SO hard because the world thinks “you look fine”. I have also seen many children lose access to things they need or love (soccer teams, theater arts, a general ed academic class) when someone realized that, oh, wait, they aren’t as “high functioning” as we thought.

I work. I have a strong marriage. I have two beautiful children. I also have a lot of accommodations from my family that allow be to do those things happily. Before I had those things? I was nearly suicidal from the effort of it all.

Here’s just a small sample of how my life is impacted:

  1. I take medicine for my anxiety.
  2. I have clean clothes and clean dishes because of my husband.
  3. My husband has to remind me to take a shower. I would go weeks and weeks. Like, when people say “how do you count the pool as a shower?” I’m like “It doesn’t?” Because it just doesn’t click in my brain. (Good thing for husbands.)
  4. My husband packs my headphones and my fidgets and anything else I need to accommodate myself when traveling.
  5. My husband makes dinner. Because it it was up to me, we would either eat the exact same food for weeks or order take-out online all the time.
  6. He also explains things to me, like if a friend, colleague, or supervisor said something and I didn’t understand their meaning or intention — I save it to ask him about later.
  7. One hour of socializing in a group of 2-3? That means a 1-3 hour nap to recover.
  8. My children get screen time right after school so that I can have a solid hour to recoup my spoons from the day.
  9. I regularly use text message to communicate with my husband because talking would be just too much and feels / is impossible.
  10. I often walk out of stores without buying anything I am supposed to (or buying a whole bunch of stuff I just threw in the cart) because I just can’t deal with them.
  11. I refused to drive for a long time because of said anxiety and could only go places if someone else could take me. Basically, I went nowhere.
  12. I absolutely have grown-up meltdowns, including stomping my feet and hitting my legs and screeching and storming off to my room.
  13. I have annoyed my friends and family to no end watching the same show, singing the same song, bursting into song at random, making noises, rocking, and so on. (My current favorite is a Fresh Off the Boat line: “I asked for the Randy and he gave me the Brad.” I can say this repeatedly to myself and laugh for 10+ minutes.)
  14. I have gone home crying and torn apart from work on days where there was just too much talking. Too. Much. Too MUCH.

These may not seem that dehabilitating, I guess, but the point is more this — no one would know. No one at my work would know. That’s not including the one million accommodations I’ve slowly built up for myself over the years. The endless mental checklists, the dozen alarms on my phone, the to do lists I print to keep myself organized and on tasks.

And my husband would probably have his own confessions list of things that are hard for him, things I help make happen. We are a symbiotic relationship. We are a one in a million match, making each other better because of it.

As an aside: What’s even sadder to me is that I feel so intensely vulnerable sharing this list because there are people in this world who would hold these against me. I am a FANTASTIC teacher, deeply, and an AMAZING mom. People are blown away by the way my kids have grown and matured over the years. They are so loved and cherished and encouraged. Yet there are people who would read that I have some meltdowns and bad personal hygiene and think that I am not a good parent.

All of that to remember — what’s on the outside doesn’t always reflect what’s on the inside. And we shouldn’t have to disclose what’s on the inside to get accommodations and access and respect. I also can guarantee that, while my daughter’s experiences are different than mine (she is her own person, after all), I can empathize with her in a way that someone neurotypical cannot, someone who has never had a meltdown about sounds or number of foods or what time her show is supposed to be on. Does this mean that someone who is neurotypical cannot be a good ally? Of course not. It just means that, yes, wherever someone else arbitrarily places you “on the spectrum” — you have value and worth and important things to add to the conversation.

Because that’s what is so beautiful about the neurodiversity movement — it is, by its very nature, inclusive. It is for all of us. It is about all of us being able to be ourselves, fully. I don’t know how anyone can be against that.

Behavior as a Stress Reaction

image of a child completely tucked into an orange body sock, no head or arm or leg visible.
student response to looking at their daily schedule

Summer is coming to an end, which means that all of my preschool babies are getting tired. It’s a long school year when you’re 3 or 4 years old. They are so absolutely ready to swim and splash and have their days in the sun. Add transitions and life events and medical issues, and there’s been some visible signs of stress showing up in our day-to-day routines. Work avoidance. Difficulty sharing. Words that won’t come out right. And a million other little ways that they say: “I am done. D. O. N. E. Done.”

I myself have been under a larger amount of stress than is typical this year. I’ve been sick. I’ve had surgery. I’ve had a larger caseload than typical. Graduate school. Financial stress due to those medical bills and graduate school. One child leaving elementary school, one child in her last year of middle school.

My family sees the impacts.

Conversations of more than 3-4 exchanges — not happening. It’s not just that I cannot participate, but I don’t even want to be around them. It’s too much at once. I have reverted to having the vast majority of my longer conversations with my husband via text message, even when we are in the same room. Sensory input that I could typically ignore, like someone patting their legs or singing under their breath sounds like it’s on volume 200. I’ve eaten the same food for dinner for 4-5 nights in a row. My screen time? Way up!

There’s a couple of take-aways… It would be really easy to see me walking away from a conversation or asking people to stop talking as being mean or rude. At best, someone might think I’m lacking some skill or another. Maybe they would see my screen time use and think that I’m a disengaged parent. Basically: there’s a lot of judgements that people could make, and none of them would be right.

Because — none of the above. It’s a stress response. My tank is full. My tank is over-filling. All the neurons and skills that I had for coping with life’s bumps (such as too much sensory input) in more “acceptable” ways are gone. And so I revert to this. Younger children or people under more stress may revert to other things: hitting, screaming, scratching, falling on the floor, and so on.

The other piece: this happens at home. It doesn’t happen during my school day. It doesn’t happen when I’m in a super important meeting with a parent. It happens at home. That doesn’t mean that I’m “doing it on purpose” or that I could just pull it together. And how many times have we thought or said something like that? But the space we have for coping skills is always in flux, sometimes more, sometimes less. And sometimes we choose to use up more of our skills in one place, knowing our safe place will be there for us when our tank is empty.

I get that this is easy to forget. It’s not exactly something our culture prioritizes. But doesn’t it make all the difference?

I think of a student who may disembark the bus screaming. If we focus on “quiet mouth” (ugh!), what do we miss? What if they’re simply hungry and have no way to tell us? What about the student who falls on the floor every time someone comes near them? Do we just enter their space anyways? What if their sensory system is so on fire that the possibility of any sort of imminent touch is sending signals of pain through their body? We are so much better able to support these students if we look to minimize their stressors and support their over-flowing systems.

It comes down to this — can we just remember that our kids are doing the best that they can? Because I think that would change everything else we do, from the tones that we use to the plans that we make.

My own safe space is home. I see in my family the kind of classroom that I want to have. I see in my husband the kind of teacher that I want to be.

Flexible.

Kind.

Accommodating.

And always, always recognizing that I am doing my best.

Can’t we give our kids that same benefit of the doubt?

Things We Can Retire: “Developmental age”

First and foremost, let’s remember that words matter. It’s not semantics. Words set the foundation for how people view our children. They create a framework of expectations and support services. They need to be carefully chosen, words selected to affirm and uplift individual’s humanity and right to respect. It’s why we don’t use the r-word and why the autistic community chooses identity-first language. Words matter.

One of the phrases that has been popping up in my life a lot recently has been “developmental age” — as in “my child is developmentally X months / years old”. It’s usually an age significantly below their chronological one. Other versions are “caring for my child is like caring for an infant” or “my child is really a toddler”.

Oh, parents and teachers, can we please agree to stop this? It’s not helpful, at best, and limiting at its worst. And inaccurate — so, so inaccurate.

It’s not helpful. After all, what does “developmentally two” even tell us? I see this pop up in lots of groups when asking for advice — “My student is developmentally two, what do I do about (AAC / work activity / behavior)?” Except that hasn’t really told us anything… What does the student like? Dislike? What assistive technology are they already accessing? What are their visual and sensory support needs? What comes easily for them? What is more challenging? Our evaluations, our present levels of performance, our conversations about our kids all need to get a lot more specific (at least in private… I understand keeping things pretty generic in public forums).

It’s inaccurate AND limiting. Here’s the bottom line: we don’t know what these students know. The students who have these phrases thrown around about them are the students who are the most challenging to accurately assess. They may have complex communication needs, significant apraxia, difficulties with sensory regulation, all of the above, or something else entirely. At best, our assessments may tell us the minimum that they know. For example, if a student shows that they can identify 5 letters, we now know they can identify at least 5 letters. We don’t know that they don’t have the knowledge of the other 21 letters. There are dozens of reasons why they may not have been able to demonstrate their knowledge. This is especially important for professionals, who need to be clear about the limitations of these assessments instead of presenting them as the end-all, be-all. When we use these tools to set up boxes like “developmentally two”, then we create preconceptions and limit access. We limit access to real literacy instruction, because “two year olds can’t learn to read yet”! They’re “not ready”! We limit access to general education classes and peers. We have medical professionals that won’t hear a child’s complaints about pain, because it’s written off due to their “developmental age”. We limit their exploration of new activities and adventures, whether it’s a 10th grade science experiment or going to a Nicki Minaj concert. We cannot keep doing this to our students. They deserve access to the entire world, to all the things that every other child and adult access.

It’s not respectful. Oh, friends, think about this deeply… Would you want someone to refer to you as an infant, toddler, child, a pre-teen, long after you left those years? I personally love to watch Hannah Montana and Lizzie McGuire. I saw Moana and Frozen in theaters multiple times. There have been plenty of times that I needed help with a zipper or a fastener or a total meltdown. I need reminders that it’s time to take a shower. One of my favorite ways to calm my body is to swing on the playground. It is an almost irresistible temptation to be next to the swings every day on the playground, actually. But, because I can speak, because I can demonstrate academic knowledge in a way the world has deemed acceptable, no one would think to call me a child. Our kids deserve the same respect. They can like what they like. They can need what they need. That doesn’t change the need for respect; our language needs to reflect that respect. Our kids’ age is simply their age. A teen is a teen is a teen.

We’ve lived this in our family. We’ve lived our 3rd grade daughter being taught Pete The Cat for the fifth or sixth year in a row, because her school team limited her. Or when she changed schools and they decided that clipping clothespins onto a box was even better, because she was a “pre-learner” (another version of developmental age, except somehow even worse). We’ve lived people thinking she shouldn’t say she hates school or us, because OMG, she’s such a precious sweet angel, a toddler in a taller body. We’ve also lived her pain and frustration  (and boredom!) over it. Indeed –it’s amazing how much more engaged and chatty — how much happier — she became with professionals that saw her, just her, no limits, no ages, no prerequisites required. Her current teacher talks about ecosystems and the solar system and the American revolution. Her occupational therapist celebrates her interests while challenging her and targeting written expression and continually raising the bar. Her vision therapist tried hard to convince her school team to work on literacy and number skills. These are the people who get to see all of her, who fall in love with her, who get her. I want more of those people.

So, yes, let’s retire this phrase. Let’s do better by the children and adults that we so deeply love and care for. Teachers and other professionals need to especially listen up, because we set the tone for speaking about disability at every eligibility or well-child check-up. We are why parents use these words. They hear them over and over over, from doctors and psychologists and school evaluation teams. They are cemented. We are the ones who are creating these artificial limits, making parents think that literacy and number sense and autonomous communication are pipe dreams. Except they are only pipe dreams when we don’t provide the services (due to the false limits we’ve set). See the feedback loop we’ve created?

We can break the loop. We can lead the change. It starts with our language, and continues with our practice. Let’s not limit kids with our words, and let’s not limit them with their access. We can do better. Let’s do it.

 

Switch It Up: Meet Kids’ Needs to Solve “Behaviors”

We’ve had a couple of little “problem behaviors” pop up that have occurred across multiple students pop up in my class. Going into closets. Climbing on the counters. Dumping everything in the toilet. The instinct from grown-ups tends to be that whole “no means no” — repeat, day after day, ad nauseam. And we say, “Why aren’t they getting it?”

But we can look at it another way — these behaviors are the best tools that the students currently have to meet their needs. These students are telling us: I don’t yet have the skills to handle this exact situation on my own. I need supports; I need instruction. If we want the behaviors to cease, we can’t just say no. We need to create environments that support students to use the skills they have, while we teach the skills they don’t.

So that’s what we did this week.

Photo Mar 19, 2 51 48 PM (1)Situation 1: Climbing on the Counter

Above the counter are shelves — filled with all the things that we don’t allow free access to. Not because we are controlling and keep a “sanitized environment”, but things like Cheerios, Cheetos, glue, scissors… Things that just can’t be free access. They also tend to be things our preschoolers really, really want. Thus the climbing on the counter. All of our students have a way to ask for help or ask for those items. But in the moment, the impulse control, attention shift, and emerging communication skills just don’t line up for them to do so. Because they’re in preschool.

We added a Big Mac switch to the counter that says “I need help”. It’s LOUD. It’s easy — even our most emergent communicators can use it. Just leaning in to the counter as they think about climbing it often activates it, so that they can quickly learn the association. It also serves as a big visual support — a “STOP AND THINK” kind of moment. And it worked. Within just a few hours, multiple students were running to the button, asking for help, and then telling us what they need when we brought their talkers to them. Climbing fell off dramatically — and fast. So much faster than any “no means no” instruction could have done. Because we met the students need.

 

Situation #2 – Potty!

The toilet is a tempting playground. My own son went through the same phase; we hadPhoto Mar 19, 2 49 18 PM to call the plumber multiple times for all the things that were flushed down the toilet. It doesn’t matter that we have lots of sensory fun available throughout the room. It’s the TOILET. It flushes! It’s loud! It makes noise! The best way to help our students stay out of trouble is to help them stay out of the toilet.

We also have students who are just recently potty trained, who need to be able to run to the bathroom and gain access quickly. We needed to balance all of the competing needs.

Enter switch #2… It sits right above the door handle, and says “POTTY!” We can keep the door shut, because we are allowing students to have a quick and easy way to meet their need. Just like our counter switch, we positioned it for the easiest access for this particular group of kids. Like with help, they all have the ability to ask for potty on their talkers. But it’s hard. It’s new. We need a bridge until we get there, and this is it.

And once again, it works. We have students requesting the potty that I had under-estimated, that I had not been sure they were yet able to request. It’s not that I did’t think they ever could, but I wasn’t sure they were “ready yet”. But they have an awesome way of continually reminding me that “readiness” can be an arbitrary concept, one that is primarily used to limit them. Readiness is about accommodations as much as instruction. It’s about what I am doing  more than anything they are doing.

Meeting needs works. Again and again.