Save Every Scrap

an overwhelming stack of documents

An overwhelming stack of documents.

File this post under “plan for the best but prepare for the worst.” And although what I’m going to say can apply to Autistic adults or parents of Autistic adults, it is directed primarily at parents of Autistic children. There is something very important you need to make sure you are doing for your child and that is saving every scrap of their disability documentation.

When I say we are hoping for the best, what that mean is that your child develops and grows and at the same time our society develops and grows and when your child attains adulthood s/he has communication skills (whether spoken, sign language, typed, or whatever) and society has acceptance of those who are different and together your child and an employer recognize what your child could offer and work together to make it happen. Or your child starts their own business and makes it happen. Or someone else starts a business centered around what your child can do and together they make it happen.

These are all possibilities, no matter what your child’s pattern of skills and struggles ends up looking like when s/he grows up. This is the best we are all hoping for. You want your child to be sustainably employed and self-supporting. I want your child to be sustainably employed and self-supporting. This is the future we are all fighting towards and hoping for.

But . . . the unemployment rates for Autistic adults are kind of grim. I’ve seen everything from 70% to 85% but nothing much lower than that. For comparison, in the worst year of the Great Depression (1933) the unemployment rate was around 25%. Autistic adults face a grim economic depression. And the pinch hits everyone. If you really want to be depressed, I can link you to lots of articles about Autistic adults with university degrees who can’t find work. Adults with graduate-level university degrees who can’t find work. It’s really hard out there for Autistic adults. An informal discussion four years ago with two experts, Dr. Volkmar and Dr. Wiesner, provided lots of optimism but few concrete solutions or numerical data. Everyone agrees it’s difficult. Everyone agrees that things are getting better. No one seems to know how much better or how fast or what to do about it all.

So here is my advice to you: save every scrap of documentation. Start today. Save what you have. Send off for copies of what you don’t have. Develop an efficient filing system for your documents. Scan your documents and put them on an external drive. Put them on two external drives and store one in a safe deposit box. Open a Gmail account just for the scanned documents and mail them all to yourself in emails with search-friendly notes in them so you can find what you need easily. Store them with a “smoking crater” mentality — that is to say, if you returned home from the grocery store one day to find a smoking crater where your home used to be, where are your child’s documents?

What should you save? Every scrap. Save all their medical records. Save every teacher’s comment. Save every therapist’s report. Save everything that documents your child’s condition. If your child is currently receiving SSI, don’t assume that the verifying documents you gave to the SSA still exist. They don’t. You need to save copies of every one of those documents PLUS all the social security documents surrounding your child’s SSI case.

If your child is not receiving SSI but is eligible, those documents will help your child get SSI. If your child grows up and is unable to work, those documents will help your child get SSI in order to help them live independently or help pay for a group home or other living arrangement. If one or both of your child’s parents die, become disabled, or retire, your child is eligible for Adult Child SSDI benefits. Even if these benefits add up to the same amount as SSI, the rules are less draconian, the medical coverage is better, and there are so many reasons your child will be better provided for on SSDI than on SSI . . . but you need to have documentation to show that your child’s disabling condition has been present since at least age 21. It does not matter that your child has a diagnosis for a condition that is known to be something a person is born with.  I know so many people who have conditions that people can only have if they were born with them (not just autism) but they still had to fight to get Adult Child benefits and provide mountains of documentation and go before a judge to prove that they had been disabled since childhood. Save every scrap of documentation because your child might need it some day in order to prove that they qualify for benefits that can make the difference between life and death for a disabled adult.

If your child grows up to be on SSI disability benefits as an adult, they might want to take advantage of the new ABLE act (Achieving a Better Life Experience) that allows a higher amount of resources to those on SSI than the standard $2000, in order to provide for certain life expenses such as housing, transportation, and education. To be eligible for ABLE,  your child will need documentation to prove that their disability began before age 26. Again, there must be documentation and the documentation must be explicit and you must expect that you and your adult child will still have to “do battle” with the government to get them to accept your proof and give your child the benefits they deserve. The documentation will have to show that the condition (in this case, autism) existed before age 26 and that it was disabling to your child before that date.

So plan now. Save every scrap of documentation you have. Get copies of every scrap you don’t have. Archive them, store them, duplicate them, make sure they are safe because they could turn out to make the difference in your child’s future between a life of comfort and needs met versus a life of struggle, crushing poverty, and possibly even an early death because of too many needs not met. Save every scrap. They are more valuable than gold. Hope for the best, but don’t fail to plan for the worst. Paperwork can be overwhelming for anyone, but it is crucial that you save every scrap of your child’s paperwork starting right now. Just in case.


#TheShortBus : My Ride Is Not Your Joke!

My Ride Is Not Your Joke - stop short bus stigma

image description: a drawing of a short yellow school bus with three happy children waving from the windows: a White boy in a blue and red striped shirt, an Asian girl in a green shirt with blue flowers and a Black girl in a blue and orange striped shirt. Above the bus are the words: MY RIDE IS NOT YOUR JOKE! Below the bus are the words: Insulting fellow human beings with “short bus” comments doesn’t make you look funny; it makes you look cruel.

When I first heard about #TheShortBus flash blog, I was unsure if I should join or not because I didn’t ride a short bus. But then I thought about all the times in my life when I’ve been called “short bus” or had someone tell me I should be on a short bus and realized that it doesn’t matter whether I was actually on a short bus myself — the stigma touches all of us. And “short bus” is symbolic of a larger body of cruel jokes people use to diminish others. There’s also the R-word and jokes about Special Olympics (including one not so long ago from our president, a man who has worked on legislation to help people with disabilities and really should have known better than to go there.) People go through all kinds of philosophical acrobatics to try to justify their use of these comments. The worst justification I’ve ever seen was Ann Coulter saying that it was ethically okay for her to call President Obama the R-word because everyone knows he’s not intellectually disabled — in her opinion, it would be wrong to call someone who actually has an intellectual disability the R-word but it’s mysteriously okay to dehumanize people who are intellectually disabled by using them as nothing but a walking insult to smack others with. Bottom line: it’s wrong! I don’t care who you are using “short bus” to mock or insult, you are hurting everyone who ever rode a short bus, all of us with developmental and other disabilities regardless of our mode of transportation, and everyone who knows and loves us. That’s a lot of people to be so cruel and stigmatizing toward, just to get your little joke in — which, by the way, is not even funny. So stop it! Our ride is not your joke! Our lives are not your joke! Treat your fellow human beings with decency and stop using language that denigrates us for being different from you. Using aspects of the lives of disabled children (or adults) as jokes and insults is unacceptable! If you are a person who makes these sorts of comments, I hope you will think about who you are hurting with them. If you hear or read people making comments like this, I hope you will be able to speak up and tell them that it’s not cool. And if this topic is close to your heart, I hope you will join in and write an entry for #TheShortBus along with us! Not only is there strength in numbers and a louder message when more of us share it, but there is joy and friendship here, too. Come join us on the short bus! We are not scary; we are wonderful and welcoming. Cruelty is never cool. Here on the short bus is where you will find the truly cool kids. ============================================= The “My Ride Is Not Your Joke” design is available on stickers and t-shirts of light and dark colors. The web picture of the design is free to share anywhere you like, so long as you link back here. Thank you.


The last few days, I have been posting on the facebook wall for Unstrange Mind, talking about the case of Reginald Latson. Some people have asked what, specifically, they should do to help in this case, so I’m writing this blog post to answer that question and to explain his situation in a bit more depth.

The Washington Post has an editorial about Reginald Latson’s situation, but here is a summary of the details: Reginald Latson (Neli to his family and friends) is a 22-year-old, black, Autistic man with an intellectual disability (his I.Q. score is below 70.) Four and a half years ago, he was sitting quietly, waiting for the library to open, when someone called the police to complain about the “suspicious black male.” The police arrived and an unpleasant interaction ensued, during which Neli was arrested (according to the police, because he “refused” to give his name. It is unclear whether Neli was able to speak or not in that stressful moment. It is clear that the police were confused about how to question a disabled person waiting for the library to open.)

Although experts have testified that Neli belongs in a facility equipped to treat him properly, he has spent the last four years in a regular jail. This is an abuse of justice — Neli’s autism and intellectual disability make him extremely vulnerable in a prison setting and he deserves proper consideration for that. And he deserves to have proper support and to be moved as quickly as possible to an appropriate facility. A judge already agreed to let Mr. Latson transition to an appropriate facility in Florida but a prosecutor has actively worked to thwart that decision.

Here are some more links to things you might want to read in order to get up to date on this issue:

Helping Neli Latson by Kerima Cevik

ASAN Calls for Neli Latson’s Release

a graphic for the FreeNeli campaign with all text on it included in the main blog postTomorrow will be a day of concerted, collective action. You don’t need to feel restricted to only acting tomorrow, but if you are able to join in, you will help to swell the voices on Wednesday, December 17th, 2014.

The main action will happen on Twitter, but you are not limited to only participating through that medium.

If you are on Twitter, you want to tweet to your general audience to encourage them to join this campaign and you want to tweet specifically to


And tell them how you feel about the Latson case. The hash tag for this campaign is:


If the short message of a tweet is not enough to do justice to your opinion about this case, you have a few options. One is to write a letter in the form of a blog post that you can link to in your tweet. Another option is to send a letter through email or even old-fashioned snail mail. You could even make phone calls. Here is the contact information you will need if you want to contact the authorities through means other than Twitter:

Governor Terry McAuliffe
1111 East Broad Street
Richmond, Virginia 23219
web page with email form

Judicial Inquiry and Review Commission
PO Box 367, Richmond, Virginia, 23218
JIRC website

Virginia Attorney General Mark Herring
Office of the Attorney General
900 East Main Street
Richmond, VA 23219
web page with email form

Whatever you decide to do, thank you for caring about the fate of Neli Latson and thank you for reading.

Crowdsourcing a T-shirt Design

t-shirt with list of top ten things you shouldn't say to a disability rights activistI saw this terrific t-shirt today and it made me want to design something similar for the Autistic/autism community: (image description at bottom of post)

I could easily come up with a top ten (or top twenty!) list myself, but I want the t-shirts to reflect the larger community, not just what I think are the most important things.

So I am asking for people to contribute things that have been said to them that they would like to see appear on the shirts.  The two shirts I want to design are:




Contributing something does not obligate you to buy a shirt!!! I just want to put together shirts that are designed based on what real people want them to say. Make sense? You can contribute suggestions for the lists in the comments of this post or you can email them privately if you wish, to unstrangemind at gmail dot com.

Thank you so much!

image description: a yellow t-shirt with a top graphic of the standard disability graphic of a stick person in a wheelchair, except they have a bow and are firing arrows into a smile face. The top caption says “top 10 things NEVER to say to a Disability Rights Activist” The list reads as follows:

1. What’s wrong with you?
2. It’s so great to see you out in public!
3. People like you are such an inspiration…if I were in your situation I’d probably kill myself.
4. Yeah we’re accessible … we only have two steps.
5. I was just parking there for a minute.
6. Wheelchair access is around the back … through the alley, behind the dumpster … just knock and someone will take you through the kitchen.
7. We’re covered by the Grandfather clause (NOT)
8. You can’t bring that dog in here!
9. Can’t he just read lips?
10. Can you drive? Who do you live with?

At the bottom is another graphic of the stick figure in the wheelchair but their arms are raised above their head in a victory stance. Below them are the letters ADAPT and above them are some words I can’t make out because they are too tiny for me to see clearly.

Too Many Hours

A sleeping woman in an orange dress with the words N24 Awareness Day 2014Today, November 24th, is N24 Awareness Day.

While this is not specifically an autism topic, it is most definitely an autism-related topic. N24 (Non-24-Hour Sleep-Wake Syndrome, or hypernychthemeral syndrome) is a circadian rhythm disorder (CRD). “Circadian” means “about a day” and the circadian rhythm is the body system that keeps people in sync with the 24-hour day and the natural cycles of light and dark on our planet.

The main part of the body that keeps track of time is a part of the brain called the suprachiasmatic nucleus (SCN) but every cell of the body has a “clock” in it, even blood cells. You can think of the entire body as a sort of symphony of time-keeping with the SCN as the conductor and the sun (or light in general) as the musical score.

When a person has a CRD, something about the orchestra is broken. One example is Delayed Sleep Phase Disorder (DSPD) in which the conductor can’t stay on the right part of the score, so the person wakes up too late and can’t get to sleep on time. DSPD is often mistaken for insomnia but it’s not really, because a person with it can sleep just fine and for a full amount of time if they are allowed to go to bed very late and wake up very late.

Another example is the opposite – Advanced Sleep Phase Disorder (ASPD) in which a person wakes up too early and goes to sleep very early. In both cases, DSPD and ASPD, it’s not a preference. The person with one of these disorders can’t help it and no matter how hard they try to sleep on a normal schedule, it won’t work unless they get very specific treatment for the disorder. Just an alarm clock will never be enough.

N24 is a very serious CRD in which the conductor has broken so much that you could say there are extra bars inserted into the musical score — too many hours. The brain functions as if they day is longer than 24 hours and so the person with N24 can’t keep to a 24-hour schedule and “slips” around the clock over time. Depending on how long the brain’s day is, a loop around the clock could take anywhere from a couple of weeks to a couple of months to complete. During half that time, the person is sleeping in the day and awake at night. It is isolating and makes it difficult or impossible to keep a job, friends, even doctor’s appointments.

butterflies escape a broken clock with the words think there aren't enough hours in the day? There are too many in ours.

Why is this an autism-related topic? CRDs are three times as common in the Autistic population as they are in the general population. Sleep, generally, is a big autism topic with as many as 3/4 of Autistic people having some kind of sleep problem.

I am Autistic and also have N24 and I would have to say that the N24 is more disabling as far as working goes than the autism. There are employers who are willing to work with the needs of Autistic employees and there are accommodations that could allow me to hold on to a good job. But it is nearly impossible to accommodate an employee with a disorder that makes it impossible for them to even show up for work at all half the time.

There are treatments that hold me on a 24-hour schedule, but they require me to split my sleep in half so the best I could do would be to work half-time and then it would all fall apart the first time I got sick because I can’t hold on to entrainment when I’m sleeping off the flu and so I lose my 24-hour schedule and have to wait a month for my sleep to cycle back around before I can start therapy again and hold myself in that 24-hour schedule again.

I know other Autistic people with N24, but most of the people I know with N24 are not Autistic because even though we have three times the chance of developing it, there are about 99 times as many non-autistic people so there will always be more of them with N24 than there are of us Autistic N24 folks. So it really isn’t an autistic condition, just one of many health issues that we are more vulnerable to, due to our neurotype.

So, on this N24 Awareness Day, what do I want you to be aware of?

  • N24 exists, it is a real condition, it is seriously disabling and very hard to live with.
  • If you know someone who just can’t seem to get up in the morning and can’t seem to go to sleep at night, learn more about CRDs and try to have some empathy for their struggles — above all, don’t call them lazy! Sleep issues are not a matter of laziness. We have very little control over how our body responds to sleep.
  • If you are an employer, think about ways you might be able to hire someone with N24. Even though it’s a relatively rare condition, there are hundreds, possibly thousands of us and nearly all of us are unemployed against our wishes. If you have a job someone could do even though they are incapable of keeping regular hours, you could end up with a very loyal and productive employee if you consider giving someone with N24 a chance.
  • There are treatments but they are complex, time consuming, expensive, and not 100% effective. Don’t assume that treatment will always work perfectly and don’t blame us or try to make us feel guilty when our treatment falls apart or doesn’t make us able to work, despite all the effort we put in. Treatment can fall apart and many of us are still quite exhausted full-time, even when we are able to get our bodies into a 24-hour schedule.

Thank you for reading. If you think you or someone you know might have a CRD, a useful resource is the Circadian Sleep Disorders Network. There is a lot to explore on the site and if you have a CRD yourself, you may find information that will completely change your life there.

An Open Letter to Jerry Seinfeld

Jerry seinfeld looking charming as usualDear Jerry,

I feel I may call you Jerry now, instead of Mr. Seinfeld, for you have declared that you are one of us: those on the autism spectrum. That means you have declared yourself to be a member of my neurotribe and at least a cousin, if not a brother. Welcome to the family.

I had some disagreement with other members of our tribe about your “coming out.” Some are not so eager to welcome you as I. I have been told that since you are “self-diagnosed,” you do not count. I replied that there is so much stigma involved with being Autistic that I am happy to greet you all the same, because you may be taking the label yourself, single-handedly, but it is a label that comes with so much judgment and social censure that, while I am proud of being Autistic, I also recognize that it is not in the same class as diagnosing yourself beautiful or talented or rich.

I have been told that no famous person should make this sort of announcement, but I think that attitude is part of the overall stigma that I fight against every day. Many of us, even those of us who are not self-diagnosed, constantly have to cope with an image problem. Because I write well, I am told I can’t possibly be Autistic. A friend who presents in front of audiences with the poise and eloquence of a classical orator is told that she isn’t Autistic enough or doesn’t look Autistic. Any marker of success we show in the world is used as evidence to attack our integrity and our identity. How much more is that trend continuing when someone says you cannot tell the world that you perceive yourself as being on the autism spectrum because you have had a successful career, a television show, and so on?

No, I welcome you as one of us. You have learned about autism and you have looked into yourself and seen autism inside you. You are willing to come forth and risk censure and ridicule when you tell everyone that you see autism there, inside yourself, and you identify with it. As you can see, the critics come from all sides, even your fellow tribe members. But I welcome you and I hope that you will choose to do much good on behalf of those of us who resemble you in one way or another.

You believe you have done good for us already, through your work with Autism Speaks. But I am here to implore you to look further into that organization and choose to stop supporting what they do. You have identified as one of us now, Jerry, and that means you have an obligation to serve our needs from within, as a brother, as one of us.

Autism Speaks says terrible things about us. They hire other people to say terrible things about us. They craft messages of horror and despair about us. Last year, 43% of their budget was devoted to advertising. From 2012 to 2013, they increased advertising spending from $2.2 million to $52.2 million . . . . a 2,260% increase in funding for sending the message that we are an epidemic, a tsunami, a devastation that destroys marriages, that is worse than diseases that kill people. Think on that for a moment, Jerry: you have been supporting an organization that says that people like you and me are worse than deadly diseases. Is that where you want to put your time and money? Do you think you are a blight? Do you think I am?

You have always seemed to me like a kind person, someone with compassion in his heart. You have always seemed like someone who observes human nature and points out the absurdity of it, but in a way that could only come from someone who genuinely loves people. You find humans lovably absurd. I have always felt that you are a good and loving person.

The good and loving thing to do is to stop supporting an organization that claims to help Autistic people yet only puts 4% of their budget toward the goal of actually helping Autistic people and our families. 13% of Autism Speaks’ budget goes toward what they call “scientific research” but what is actually genocidal research designed to ensure that people like us are never born again, whether through discovering causes and eliminating them or devising a pre-natal test so that we can be aborted before we ever get a chance to take a breath. This is how Down Syndrome was “battled.” An estimated 90% of babies testing positive for Down Syndrome are aborted now. Do you think I should have been aborted? Do you think you should have been aborted, Jerry? Do you think the world would have been a better place if you had never been born? I don’t think that about you at all and I plead with you to stop supporting an organization that does believe that. Autism Speaks is an organization that is working toward a goal of “curing autism” and that goal means that people like you and me, as well as all of our beautiful fellow neurotribe members, will be wiped from the face of the earth.

I do not think that would make the earth a better place at all. I do not think destroying an entire neurotype is the way to make anything better about our planet. I do not think we should let anyone wipe out a people who are noted for, among other things, a very strong sense of justice and a depth of compassion so deep that we are accused of lacking empathy when we are forced to turn away from the extreme pain we find when we engage this world that can too often be harsh and cruel.

I would urge you instead to support organizations that are supported by your fellow Autistics and that support the needs and goals of Autistic people, not of those people who would seek to destroy autism and Autistic people.

Jerry, please turn your efforts toward groups like: The Autistic Self-Advocacy Network (ASAN), The Association for Autistic Community, Autism Women’s Network, Association of Programs for Rural Independent Living, Autism National Committee, National Council on Independent Living, Ollibean, Taishoff Center for Inclusive Higher Education, or any group that supports Autistic people as fully human, fully participating, fully respected, fully supported members of the community of humankind.

Thank you for reading this, Jerry. And thank you to everyone who read along with Jerry. This is my plea not just to you, Jerry, but to the world. Some Autistics have found worldly success, like you, Daryl Hannah, Dan Aykroyd, and more. But most of us need so much help and support. We need acceptance and accommodations. We need you on our side, Jerry, now that you have realized that our side is your side, too. Why do I not care whether you “really” are on the autism spectrum or not? Because the oppression of any person is the oppression of every person. Whether you “really” are Autistic or not doesn’t matter because our battle is your battle anyway. We are fighting to be recognized as wholly human, worthy of dignity and respect, worthy of participating fully in the community, deserving of acceptance and assistance. We are asking to be known and wanted and treated well. We are telling the world that we have so much to offer if others will be willing to meet us half-way and accept what we bring to society. The world needs Autistic people, Jerry, and whether you are Autistic or not (and I am happy to believe you are, and to welcome you to the neurotribe!) it is time for you to see the harm that Autism Speaks does to our cause, our hopes, our dreams, our needs. We want to be part of the whole human family and Autism Speaks seeks to cast us out from the world forever.

Please join us, Jerry. Please join your people. Please be fully one of us — not just in name or public recognition, but in heart and spirit and soul. Please do not support groups that want to hurt us and erase us. Please work to help make the world better for Autistics — better for me, better for you, better for everyone like us, our tribe, our family.

Thank you, and I hope you will investigate the organizations I mentioned above and choose to put your energies and resources with us instead of against us.

My Love and Respect to You,

Sparrow Rose Jones

What Does Helpful vs. Harmful Therapy Look Like?

About a month ago, I wrote about the types of therapies used with Autistic children. I mentioned the sorts of practices that are not advisable and what to look for to see if the therapy your kid is getting is helpful or harmful. I was thrilled to hear from lots of parents whose children are getting great therapy that builds them up in many ways. I am so happy that there are professionals out there who understand autism and work to help kids grow up to be their happiest, most productive Autistic selves instead of training them to pretend to be someone they aren’t.

Many other people asked for something more specific than the words I wrote. Some people gave me links to videos and asked me to comment on them. Others asked me if I had videos that showed good or bad therapy practices. That’s what this post is all about. This is important stuff and many people specifically asked me to do this. It is not my intention to publically shame anyone by using publically available videos. I am sharing one video that I found particularly disturbing and two video examples of good therapies in the hopes that seeing these examples will help make the ideas I write about more visual and understandable.

I’d like to start with a four minute video titled “Isabella 22- Knock-down drag out battle for Severely Autistic Child to attempt Speech“. I want to warn the sensitive that this is a difficult video to watch. Many of my Autistic friends were unable to watch the video or could only watch a few seconds before they had to turn it off because of the level of suffering and because of the difficult memories it triggered in them. I watched this video several times so I could analyze and write about it and it was very hard for me, too. There are reasons why I am only sharing one example of harmful therapy and one of those reasons is that I just can’t handle watching very much of it myself.

And, again, I want to emphasize that I am not accusing Isabella’s parents of anything. I am 100% sure that they are loving parents who care deeply about their child and her future and who believe that they are helping her to have a better life with the therapy they are providing for her. But I cringe in pain when I see what the poor girl is being put through in the name of helping her. I assume her parents put this video online to help others know more about therapy. Please take my comments in that light as well.

Let me start by talking about my broad impressions of this therapy session. Just the title of this video is a first clue about the attitude the adults in her life have toward Isabella’s therapy. They call it a “knock-down drag out battle.” Now, I’ll be the first to admit that parenting, or being parented, can often be a battle of the wills. I was a pretty difficult kid and I’ll admit that. But this video is nearly four minutes of Isabella crying with frustration and confusion while her therapist repeats “ma ma ma!” at her, over and over, trying to get Isabella to say “mama” and get gummy bears as a reward.

The therapist showed her candy, then withheld it from her while making lots of confusing sounds at her and leaving Isabella to try to figure out what the heck was going on, what was expected of her, and why she could see but not get the candy. If I dangled candy in front of a child but refused to give it to her and made her cry with frustration, you would call me a bully and say I was taunting the child and that I should stop making the little girl cry and just give her the candy, right? But because Isabella is Autistic, some professionals believe it’s not cruel; it’s therapy.

There are so many important things to say about this short video of a therapy session. Something really important, though, is that this is not in line with the ways language acquisition occurs. What is happening in this therapy session is closer to the way animals are trained to perform tricks. When I was a pre-teen, I taught my standard poodle to shake paws. He never understood what a handshake meant to me — all he ever knew was that it made me very happy if I put out my hand and he put his paw in it. And he liked to make me happy, so he learned to shake paws very quickly and would do it every time I offered my hand. And I never used food to teach him, just affection. And I never made him whine with confusion or behave in a distressed manner.

Now, I don’t mean to compare an Autistic child to a dog. That would be demeaning. But look at this speech therapy and tell me that Isabella is not being trained like a dog to mimic a behavior she doesn’t understand any more than my dog understood a handshake. In fact, Isabella is being treated far worse than most dogs are treated, because she is in real distress as she tries to get the candy and has no idea what is going on or why she keeps getting teased with candy. This is exactly the sort of trial-and-error behavior shaping you see when people train monkeys or bears to perform in circuses. It assumes that the subject being trained is incapable of understanding anything and must be bullied, badgered, and tempted until it randomly performs the act (or makes the sound) and then operant conditioning is applied to strengthen the desired response. This is not speech therapy, it is monkey training and, my apologies to Isabella’s parents, but it is painful to watch. This is not a therapy that respects Isabella’s personhood or addresses her needs.

Not only is this treatment cruel, it is setting the stage for potential future violence. This kind of therapy creates massive amounts of frustration in people who have limited ability to express their needs and wants and who are often not allowed agency or autonomy. Right now, Isabella is wringing her hands and pulling at her clothing. How much of this can she take before she starts pushing the therapist away? When pushing doesn’t make the frustration stop, how long will it take before she resorts to hitting or biting? I was a hitter and a biter, and just watching Isabella’s frustration makes me want to forget everything I’ve learned that keeps me from hitting people now.

This is really important. People worry a lot about their “violent” Autistic children as they get bigger and stronger and harder to control. But far too often, the “violence” is stirred up by years of very frustrating therapy just like the session you are seeing in this video of Isabella. There’s only so long that a person can take being pushed into sobbing meltdowns of frustration before they are willing to do whatever it takes to get the torment to stop. It is not only heart-breakingly cruel to treat a child this way, it is grossly irresponsible. Therapy like this creates problems. The best it will produce is a child trained to do things that make no sense in order to avoid distress and get rewards. The worst it will produce is a child that bites, kicks, hits . . . and gets bigger and stronger along with becoming less and less controllable. This therapy is not designed to raise a child who feels safe and comfortable with who they are, who feels safe to express their individuality, who is mentored in growing and developing into the best person they can be, expressing their true nature in ways others can come to connect with. The goal of being “indistinguishable with their peers” is a goal meant to make other people feel comfortable and happy. The goal of any therapy for an Autistic child should be to help the child feel more comfortable and happy. Therapy is not supposed to be about performing for others — it is supposed to help a person grow and express themselves in the truest, healthiest way possible.

At 58 seconds, Isabella gives up and starts to wander away. The therapist gets her attention and shows her the candy again. Isabella goes back to crying because it is so frustrating for her. From her perspective, she is being teased and taunted with candy she can’t have. She doesn’t understand what the therapist wants from her and she is filled with anger and frustration and probably a massive sense of unfairness about the whole ordeal. At 2:20, the therapist says “any sort of verbalization.” Isabella is making plenty of verbalization and some of it is even pretty close to an M sound, but the therapy continues and those verbalizations aren’t rewarded. How confusing for the little girl!

And listen to what one adult says at 3:25 – “we can’t let you win.” What? Isabella is frustrated, angry, upset, crying, has no idea what they want, has made lots of “mmmmm” noise, has put up with having her lips pinched, having people make tickly uncomfortable sounds against her forehead, and the adults are framing the whole thing as some kind of battle of the will that they can’t let her win? This is not a game to the little girl. She is not resisting making the sound because she is obstinate. That comment, about not letting her win, is possibly the most upsetting thing about this video for me. It’s not a game. It’s cruel. It’s confusing. And I am sure that Isabella is not thinking of this session in terms of getting the upper hand or refusing to give the adults what they want.

So how else can speech therapy look? Well, here’s an example: RPM – how it’s helping non-verbal autistic children. These are not isolated cases — I know children and their parents who are using RPM to learn expressive language. Over and over, I hear the same story: the people around a child think they are “not in there,” are deficient, incapable, not understanding, unable to communicate, or other similar or related thoughts. Then RPM is brought in and suddenly everyone is shocked to learn that the child they thought was “sleepwalking” through life was actually soaking up knowledge like a sponge. I have also known parents of children who did not get any kind of language therapy but their child spontaneously began spelling words on an iPad or with magnetic letters.

I have a few big problems with much of the standard speech therapy:

1. the emphasis on speech-only. I won’t deny that speech is very important in this world, but some people never speak. Will we never give them a way to communicate? To me, that feels like punishing someone for being unable to speak. Deaf children who are taught sign first have better overall language skills, whether they learn to speak later or not. Their written English is better if they are allowed to start with sign instead of being pushed to only speak and write English. Autistic children are the same way. If you want good future language skills, don’t insist on only one method of communication now. Allow signs and gestures. Work with pictures. Try RPM or another similar method of spelling. Try everything and don’t make your child get stressed about language. The more you can open up your child’s options for communication now, the better their overall language acquisition will be for the course of their entire life.

2. The emphasis on getting children to say things that please others rather than things that please parents. Isabella was supposed to say “mama.” Over and over, I hear parents say they suffer because their child doesn’t say “I love you.” I find it unsettling that there is so much focus on getting children to say things other people want to hear. I rejoice when I see children learning to say “I’m hungry” “I hurt” I want” and “no.” Teach a child the things the child will want and need to say. “I love you” can come later. Be honest: those three words, “I love you,” are for you, not for your child. Therapy should not be selfish — it should be about giving the child the tools that are important to the child.

3. The teaching methods that involve lots of emotional stress and confusion. Don’t underestimate Autistic people. We often look like we aren’t paying attention and aren’t understanding. Give us a chance. Don’t just assume that you have no choice but to train us with candy and tears. Look for therapies and teaching methods that enlist us as partners in our education.

I have another video to show you. I asked my friends to share therapy videos they especially like and this five minute Sensory Diet therapy video came from Cynthia Kim at Musings of an Aspie.

First, look at how much fun the kids are having! This is something I heard a lot from parents after my ABA post last month — that their children love the therapy they get and they laugh and rejoice and only cry when it’s time to leave because they want to keep going. That warms my heart beyond the telling! Yes! If your child loves therapy, you chose well.

This physical play therapy the kids are doing is really important stuff. The narrator mentions that the play is engaging their vestibular and proprioceptive senses and helping them to feel like they are a part of their body, connected. It is impossible to overstress the importance of this sort of sensory play. I am here to tell you that feeling disconnected with one’s body has repercussions you can’t even imagine. I work to get “in” my body more and my body-mind disconnect affects nearly every aspect of my life. It is imperative to know, hear, and trust your body. Help your child to feel more connected to their physical existence and you will have a calmer, more centered, more confident child.

The kids are learning other stuff in this therapy, too. They are learning interaction with others, they are learning to ask for what they want and need, they are learning to take turns and consider others. There is a lot of social learning that is happening while they are focusing on body learning. This is great therapy! I admit, I’m a bit envious — I wish I could go play, too.

I hope that sharing these videos and talking about them has helped to make the idea of helpful vs harmful therapy more concrete and clear for you. I sometimes hear parents say that these ideas are great for kids wil “mild autism” but their child is “too severe” and needs more. You might already know that I feel that separating the Autistic world into “mild” and “severe” (or any other similar division you might choose) is harmful to all Autistic people. But beyond that, thinking this way about your child is harmful to your child. No child is “so severe” that they need to be made to suffer. If therapy time is stressful for your child (and especially if therapy time is stressful for the whole family) you really want to think about the therapy you’re using and what the goals are and whether those goals are worthy of your beautiful child or not.

I want to leave you with a link to a blog entry — Caregiver Burnout from Love Explosions. The entry was written to address parents who feel burned out with everything that goes into caring for autistic children, but it is far more valuable than just that stated goal. read this blog entry because it paints a picture of what a healthy family looks like. The author has two beautiful daughters, one of whom is Autistic. If you are one of those parents who thinks the ideas I’ve been talking about here don’t apply to your family because your child is “too severe,” you should know that the Autistic daughter in the Love Explosions family is non-speaking and has epilepsy and is, by any way you would choose to measure “very severe.” (Although that is not the way I think of Evie! To me, she and her sister are beautiful, bright, wonderful girls who I think of first as little sisters and second as dear friends.)

This blog entry will show you what a happy, healthy household with an Autistic child can look like and what “therapy” and education for an Autistic child who is developing wonderfully into a healthy, happy Autistic adult can be. There is a lot to learn in Beth’s entire blog, and there is much wisdom to be gained in this one entry about living happily together as a family. I urge you to read Beth’s words and take them to heart.


Get every new post delivered to your Inbox.

Join 1,060 other followers