One of the things that my husband and I get asked a lot is “Where did you start”, in reference to our youngest son’s diagnosis.
Now, I have to say that over the years I have figured out that some of our story is not typical, in that things kind of just…happened.
We talked with Wonder Boy’s pediatrician, she referred us to Early Intervention. As he aged out of EI services at age 3, we were fortunate to land a spot at the preschool we wanted him to attend. And when he was done there, he transitioned into an integrated classroom in the school district. I’m telling you, with him, things just happened in the ways we wanted.
Things were different for Speedy, and I find myself perpetually in a state of “where do we start” where he is concerned. Sure, he received a diagnosis- three, in fact. And it’s become clear to me that perhaps we have been seeking help in ever-so-slightly the wrong direction.
I believe, quite firmly, that several things which have happened in Speedy’s life have played a big part in the trauma-like responses that we get from him:
Quick, highly emotional responses
Reactions which do not match the situation
Fight or flight mode always set to fight
Always in a state of either protecting himself or hiding himself
Heightened fear response
Getting help for this is not so easy, and therefore we definitely are feeling like many families do: WHERE DO WE START???
We want him to feel good about himself, about his family, about his place in this world. So, after talking with a great many people about it, we will try therapy for him. And possibly for me as well. Because every single day I say to myself “I don’t know how to be who he needs me to be”, and that makes me both scared and sad.
Where to start? Trust your instincts. Do a LOT of research. Advocate. And if you feel that there are unanswered questions, continue moving through the people who may have the ability to provide the answers. We haven’t yet gotten there with Speedy, but I have no doubt we will.
Ever have to start an essay with “What I did last summer was…..”? Goodness, I hope so, otherwise I may have to change my title!
When I approached people at work this year about changing a decidedly abbreviated Autism Awareness Month movement to a very robust and enthusiastic Autism Acceptance Month movement, I wasn’t really certain anyone would want to listen. I mean, plenty of people have loads of ideas, don’t they? I needed to be sure I was well armed with better groups to align with, more current information.
And when I walked in with a month worth of social media ideas and community outreach opportunities, I was heard.
And for the first time in a very very long time, I feel as though what I say- what WE say- actually means something. I feel as though we could in fact help our community as a whole begin to change the narrative from one of fear-mongering to one of strength, inclusion, unity.
So… it’s nearly the end of the month. I’ve photographed perhaps a hundred or so people (I truly haven’t counted) who have heard what I’m saying about understanding and accepting the autistic community. I’ve heard their stories and shared mine, including my own personal move into self-identification. This movement has, to my mind, done precisely what it set out to do: change the perceptions held by the non-autistic community about autism, and provide them new information which may help them be more open to inclusion.
And just because April is nearly done does not mean that my our work is over. No way. Inclusion, acceptance, understanding, support, love, they are needed twelve months of the year. Our work has only just begun, lovies. Are you ready?
So, it’s April. For many people, it’s Autism Awareness Month. For all too many people, there will be blue lightbulbs and puzzle pieces everywhere. And for those of us who are aware of their meanings, it can be the hardest month to deal with.
For our house, and happily for a growing number of people, it’s Autism Acceptance Month instead. And here’s why.
So many people have written on why the blue is bad, why Autism Speaks is a bad organization, why the puzzle pieces are such a horrid representation. There’s not really much point in me adding my voice in to the choir of voices all standing up and shouting WHY WON’T YOU HEAR US??
So I’ll take a different approach, and write about our journey through the last several Aprils.
April 2014. As far as my husband and I knew, it was our first April as Parents Of An Autistic Child (or POAAC if you want to be that way). In actuality, we’d always had an autistic child, but it was our first April since he received his diagnosis. Like so many parents, grandparents, aunts and uncles before us, we had been funneled towards Autism Speaks by our Early Intervention case worker, by our developmental pediatrician, by well-meaning friends.
We saw the blue lightbulbs and the puzzle pieces and did what a lot of people do: we adopted them as a way to represent what we were only just beginning to figure out.
I went to a tattoo artist and had him create what I thought was the perfect puzzle piece tattoo.
We changed our profile photos every April to “Light it up Blue” photos.
And then, slowly over time, we began to read more things written by people who are autistic. We began to read about how Autism Speaks marketing very powerfully sells the idea of blue and puzzle pieces (though they weren’t the first to use it, that belongs to an organization in the UK) and uses it to get people to send them money. But money for what? Well, that changes from year to year and with new leadership. Ultimately I see them as an organization for the as-yet-uninitiated. It can be a landing spot for a few interesting pieces of information, however I don’t recommend spending too much time there.
Eventually, we found the Autistic Self Advocacy Network and found that the voices there are all autistic voices. That they speak frankly and factually. That they detail out the supports that are still needed, the ways we can help, and the ways not to “help”. Over the course of the last few years, I have spent countless hours making sure that I read voices of people who are autistic, rather than the voices of people speaking for them. Nothing about us, without us. It’s important.
April 2018. By now I have realized why my children are autistic- it’s because I am too. And that’s awesome! We totally get each other, and we can teach them how to be advocates not only for themselves but for anyone who wants help advocating. Instead of puzzle pieces, our symbol is the infinity symbol in a full spectrum of color, representing neurodiversity.
Instead of blue lights, we use regular light bulbs because who can see anything by blue light anyway? I mean come ON that is the oddest thing ever. In all seriousness, though, autism is literally a spectrum. It’s IN THE NAME. So why represent only one color? (By the way, Autism Speaks, when asked about the blue, actually told me that it’s because the founders’ grandbaby is a boy with autism)
So here’s my short list of how you can help.
It’s crucial that you talk with people on the spectrum to find out what is important to THEM. Give people the time they need to answer a question. Don’t force eye contact (we can do it, but it doesn’t come naturally and for some of us is physically painful). Ask us about our interests, tell us about yours- maybe we have something in common. Learn to recognize our overload signs and give us a quiet space to regroup if we need it. Be. Patient. Help us to push for better representation in government. Help us get the supports and services we’re asking for. Don’t STOP helping when April ends and May begins, please.
Tomorrow (specifically evening), Speedy turns 8 years old. It’s hard to believe from his rocky beginnings how far he has come.
This was a child who nearly didn’t make it- when I was 25 weeks pregnant, my husband and I were in a car accident. The van slid on black ice across a T-intersection and went off the other side, over a 12 foot drop. First our van went, and then we watched in shock as three more vehicles slid through the same intersection and were airborne overhead (and luckily off to one side of us).
I spent four days in the hospital with internal bleeding, and there was great concern over whether we’d need to leave our hospital to be transported to a facility with a neonatal intensive care unit.
Speedy had other plans, and decided to stay put until he was full term. Whew. Unfortunately, the damage caused by the accident also caused him to be under great stress during labor, and I found myself watching a nurse who was watching the monitors. “Come on”, I implored her to just tell us what was wrong. The doctor arrived, and went pale when she saw how low his heart rate was. My husband and I all but begged her to just tell us straight what was going on, and she breathed a great sigh of relief when we said that of course we would agree to the cesarean section.
Some amount of time later (I really haven’t the foggiest- those medications they give you are spectacular), my husband was telling me that his first child was here and oh he’s so amazing and beautiful. What I didn’t know at the time was that he was grey and not breathing and definitely not responding. My poor amazing stoic husband, after so many years working in emergency medicine, knew exactly what was happening and wouldn’t tell me. Not then.
It wasn’t until many hours later that I would be told the tale of my not really alive baby who they revived. And even now today I recall the shock and the pain of being so close to losing him. Twice.
I have to think that with everything he’s been facing for the past few years that there must be some connection between in utero trauma and his trouble with emotions, attention, and many other things. And we’re starting to explore ways to support him best, keeping in mind that we may never know if this impacted him at all.
At the end of the day, I see this amazing child, this champion of friendship who loves with his whole being, who smiles with his whole face, who throws himself body and soul into everything he does. He wants everyone in the world to be his friend, and he wants everyone in the world to be happy. And what an incredible gift he is to us, to the universe.
What do a lightbulb, a puzzle piece, and the color blue have in common? Well, nothing actually, unless you’re talking about a potent marketing campaign by an organization who markets autism (Autism Speaks) much in the same way that another organization markets breast cancer (Susan G. Komen Foundation).
It’s March and we’ve made it through another winter full of snow days and illnesses and have come to (almost) spring weather relatively unscathed.
With this warmer weather brings an annual event which makes my eyelid twitch: Autism Awareness Month.
Now, don’t get me wrong- I get the need to raise awareness. Which leads me back to the lightbulb, the puzzle piece, and the color blue. While the marketing is strong, has anyone actually learned anything from the Light It Up Blue campaign, the puzzle piece merchandise, the fundraiser walks? Has anyone not already up to their elbows in autism actually walked away with a better understanding when April slips away and May is in full swing?
I’m going to say NO. Because several years ago, I was among the population of people who knew nothing of autism. Because I knew that people got blue light bulbs and wore their puzzle piece pins, but I had no clue what any of that meant. Because I still talk to families new to the diagnosis who feel lost. And because the organization behind that movement really wasn’t trying to raise awareness- they were (and still are) trying to raise money.
Why are their chosen symbols a problem?
The color blue was chosen because the AS founders had an autistic grandson. They literally chose the color because he’s a boy. That’s the only significance. There is a massive difficulty in obtaining diagnoses for girls and women because the diagnostic criteria only considered this to be something found in boys. Autism looks different in girls and women, and this “blue washing” has basically ignored the girls who are fighting for the diagnosis that will help them obtain supports.
The puzzle piece has left the autistic community feeling as though they are looked at as having pieces missing. This is never okay.
I don’t know about the light bulb, other than it was just a clever piece of marketing at the time.
Now, sure, they’ve reworded their mission statement to sound less inflammatory. They’re under new leadership and they’ve even added two autistic people to their Board of Directors. Two. People. But when you dig a little deeper, and I did, you find that their mission really hasn’t changed. They state in their “For The Record” page (I’m not linking here- you can go find it but I don’t want to send people from my page to theirs) that because science tells us that there is no single “autism” that there is surely no single cure. Yes, they actually state this:
So, here is a short list of autism facts and information, to help with understanding/awareness:
Autism is a neurological processing method, not a disease (ergo, no “cure”)
The social “difficulties” that go hand in hand with autism are often a matter of neurotypical people not understanding the many ways in which we communicate (why we need understanding and acceptance)
Sometimes, behavioral issues come about when people are not provided with all of the information they need or the communication tools they need. This can be solved with the help of teachers, parents, therapists, and friends!
Now, did you need a blue lightbulb profile pic frame for that? Would that photo frame on your Facebook profile have done anything to help anyone else become aware? No.
And frankly, when the autistic community continues to very clearly say “AS is damaging and doesn’t speak for me!”, you really ought to listen.
SO. What now? What organizations can and should we support to further autism acceptance and flip the script from [damaging and evil] to [a world of interests, a strong love for friends and family, and an uncanny ability to be open and honest]?
ASAN works to dispel the myths, present the facts, and to help people move out of “awareness” and into #autismacceptance.
I’ll continue the “who to support” conversation in April, but I really needed to get this off my chest.
In April, and every month, I ask you to join me in moving the narrative in this direction. Do you know someone who doesn’t know anything about autism? Help them to learn, understand, and accept the members in their community who are autistic! Get to know the facts, and not the hype. Understand that this is not a travesty, this is not an epidemic, this is a neurological functioning and neurodiversity (the many different types of ways people process the world around them) is a beautiful thing.
It’s been too long, old friend. I’ve been taking a hiatus from, well, everything. If you know me in real life, you know that I’ve been trying to get to the bottom of what’s happening for me medically. Though there aren’t many definite answers yet, I’m working with a great doctor. I can boil it all down to the fact that typing for too long is challenging for me, and I’m working on solutions. Accessibility to the rescue!
Speaking of which, I want to talk today about a really important tool in the world of accessibility. This is the Picture Exchange Communication System, or PECS for short.
PECS are small laminated cards, each with one image and the corresponding word. Typically these are kept in a small binder with the assistance of hook and loop (Velcro®) strips. When someone does not communicate verbally, they can use these cards to request specific items or to carry on a conversation.
PECS have morphed over the years and there are programs and apps on devices which allow people to carry limitless PECS items right on their phones or iPads. For some people, the touch screen of an iPad can be easier. For others, the old tried and true method of holding a card in their hands or looking at the card in their book works best. It really varies, and multiple methods should be tried.
This shouldn’t be mistaken for a Picture Schedule, and I’ll talk about those in the next post.
I am fortunate to work with some really incredible people. One of the people I work with has been utilizing PECS with some people who have limited verbal communication and who often get very frustrated. Well, wouldn’t you get frustrated if you couldn’t express yourself in the way everyone else does, and decisions about your daily life were made FOR you but not WITH you? Yeah. You really really would.
A little exercise: Close your eyes… well read this first and then close your eyes. Imagine that you do not speak. Imagine that you have people come and go throughout the course of your day, all of whom are telling you where to go and what to wear and what to eat. Imagine that these people are not giving you time to make choices- they may ask you if you want to go to this place or that, but they never give you the opportunity to process the question. Now imagine that they get frustrated with you for not answering right away. Imagine how frustrated you might be if they gave up and took you to the place where you didn’t want to go.
Now imagine this: The same person asks you where you whether you want to go to the park or the museum. She also shows you two pictures: one of your favorite park, and the other of the museum. She then waits for you to look at the two pictures, and gives you time to decide. You then point to the park, she asks you again “Do you want to go to the park today?” and you nod. And off you go, to the park.
How different did those two scenarios feel? In the first, you were not given all the tools you needed to communicate- not just the cards, but the time and the patience to consider your options.
In the second, you were provided all the tools. The person giving you the choice allowed you the time needed. She showed you respect and treated you as she would anyone who communicates verbally, she was not impatient, and she reaffirmed how the cards work by then taking you to the park as you’d requested.
PECS provide not just a method of communication, but they also provide information. By showing a picture and a word, and by being followed up by the thing being requested, the cards teach that the person using them has autonomy. And I don’t mean that the person using them is the only one who learns this. The people working to support that person also learn it, and this is important.
So back to the person I work with… I got a little bit derailed there in an effort to get you to see and feel what I’m talking about.
Recently I watched the almost instant success that PECS can bring (again, not necessarily for everyone, but if an iPad app has not been successful then they’re worth trying!). One of the people visiting our office reached a point where he was feeling upset and a bit cornered and definitely overwhelmed. There was work that could have been done ahead of time that might have prevented his meltdown, but that work had not been done to prepare him for what was going to happen. So we worked with him the best we could, and my coworker grabbed his PECS cards. She showed him the one for his house and the one for the building where we work, and asked him where he wanted to go (she used the names of the places as well). We gave him time, and we let him start to calm his body and mind. She asked him calmly one more time, and he pointed to his house and off they went.
That was a really important moment, for all of us. The person who brings him out into the community was amazed at how quickly we were able to help him regulate and calm his body, and how the cards worked despite the fact that the same question had been asked multiple times (without the cards). They work, simply put.
And yet, they’re an under-utilized, under-appreciated tool that supports people with non-verbal communication as well as supporting those who are working to give people the tools they need in order to communicate.
We must meet people where they are, rather than expecting them (unrealistically) to come to us and then getting mad when they can’t. Sorry, sweetie, life doesn’t work that way. Let’s make communication more accessible- the tools are there, we simply need to try them!
Oh- and by the way, this is how Wonder Boy communicated for a couple of years. It changed our world.
I remember a time in the not-so-distant past when I wondered to myself when or if I would hear my youngest child speak in sentences. If I’d ever hear the soft “I love you, mommy” or have a conversation in spoken words with him.
It took me a great deal of time and effort (and study) to come to the realization that communication can happen in many forms, and that you can never truly know what the future may hold. As it turned out, he would speak, and there are days now where I wonder if I’ll ever enjoy silence again…
Part of communication is advocating for one’s needs. We’ve become quite accustomed to the ways in which he advocates, and today provided a perfect example.
He walked across the living room today while the room was mostly silent. He grabbed his headphones, a pair of black and white noise-muffling over-the-ear headphones which do a fairly nice job of reducing nose levels in a room. In this case, the room was already pretty quiet, so I’m going to assume that he was seeking the gentle squeeze, the proprioceptive input that the headphones also provide (his first method of advocating for what he wants and needs).
The headphones have a panda face on each ear, and are just so sweet that I asked him if I might take a photo. “No”. “No?” “No.” And that, my dears, is that. No. He did not wish his photo to be taken. (his second advocacy)
He then asked for a snack, and guided me through exactly what he wished for. This isn’t so much advocating as requesting, but you could count this as well.
It takes being truly comfortable with your space and who it contains to be able to do what he did, and I am forever grateful for the fact that he knows without a single doubt that his voice will always be heard, his communications will always be taken into account, and his requests always considered.
Yesterday, I took both boys to their first dance class- a movement class for kids with special abilities. I was so excited that he wanted to try it out, and they had a wonderful time. We saw a girl who had been in Wonder Boy’s preschool and it was remarkable to see how much she’d accomplished since those days.
When we were getting ready to leave, WB said that he did not want to sign up to return. While I was saddened by that, I also have to respect that he made his wishes quite clear to us.
We must always consider people’s needs, no matter how they communicate but especially those who are not able to communicate verbally- look for other ways in which someone is speaking to you, whether that be in actions or in response to your actions. Take time to meet people where they are, rather than force your methodology and your ideology on them. And for the love of pete, respect people.