Tag Archives: Stanley Greenspan

Autism ≠ Developmental Delay

There were few things that led us more astray than the idea of autism being a developmental delay.  Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan.  (This post is not about Stanley Greenspan or his method.  His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal.  The private hell of regret is a cruel place to linger.  Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.”   In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell.  Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood.  Because people assumed  she spoke what she intended and meant, she was penalized for the words she managed to utter.  “Do you want to go fast or slow?”  “Do you want to stop or go?”  “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions.  We assume she has no interest in engaging.  We assume she doesn’t want to spend time with us.  We assume she is “in her own world.”  We make assumptions and we behave according to those mistaken beliefs.  We believed each word was a milestone, paving the way for more language acquisition.  We believed it made sense.  Lay the foundation, create a strong base of words for more to follow…  Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed.  This idea of a developmental delay bled into every single aspect of her being.  It was believed that her speech was delayed, as were her fine and gross motor skills.  Therapies were structured around this concept.  All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six?  At the time we didn’t question any of this.  Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know.  We listened to the many professionals we consulted.  Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter.  It never once occurred to me that maybe, just maybe what she said was not what she intended to say.  It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider.  We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma.  Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing.  Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Emma’s Presentation

Tomorrow’s Presentation

“Rethinking Your Beliefs About Autism”

When the Body Does not Obey the Mind

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004.  The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between.  It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else.  One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

Cynthia Kim, author of Nerdy, Shy and Socially Inappropriate ,  I Think I Might be Autistic, the blog Musings of An Aspie and owner of StimTastic said, “That waiting to catch up feeling is so insidious and one that I subconsciously lived with for a long time.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal).  It meant pursuing all kinds of therapies that never questioned the push for spoken language.  It meant not considering AAC devices, because she “had language.”  It meant encouraging my daughter to “use your words.”  It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught.  It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot.  Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it.  My daughter amazes me every, single day.  As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

Emma - 2006

Emma – 2006

AutCom 2012 Conference – The Best Kept Secret

The Autcom conference was a fleeting glimpse into paradise.  A tiny taste of how the world could be were we accepting of each other, treated all people as equals and with respect, without prejudice, without assumptions, without bias.  Autcom was a window into how the world could be, but isn’t.  Not yet.  Words do not do this conference justice.  How could they?  How do you describe a room full of people who are connected not through race, nationality, religion, political views or neurology, but instead are connected by an idea.  A vision.  How do you describe that?

Accommodation – it’s a word we hear, but what does it really mean?  At the Autcom conference it meant waving hands at the end of a presentation instead of clapping, lowered lights, snacks that included gluten-free and casein free items and non dairy alternatives.  Accommodation meant no one stared disapprovingly at anyone who stimmed or made noise or got up to leave in the middle of a talk.  Accommodation meant people were polite and moved chairs that might be blocking someone’s ability to come or go.  It meant using a microphone or repeating a question for those who weren’t able to hear the first time.  It meant being respectful and considerate when someone came up to peer at your name tag and it meant understanding that when that person gently touched your hand after a presentation it was their way of thanking you and I defy anyone to not see the beauty and love in that.  Accommodation meant slowing down while someone typed their answer or question or thought.  It turns out accommodation means being a thoughtful, considerate human being who is respectful of others.  How is it this isn’t done automatically, as a matter of course.  How is it that we as a society have drifted so far from this very basic and easy way of being in the world?

The single biggest issue I had with this wonderful conference was that there were too many terrific things going on at once and it was impossible to see and hear everyone and everything.  To give you an example of this – on the first day of the conference after Ari Ne’eman’s welcome and an opening keynote address by Jennifer Paige Seybert, was Savannah Nicole Logsdon-Breakstone’s presentation – Loud Hands Project’s Neurodiversity 101.  At the same time, Larry Bissonnette, Pascal Cheng, Harvey Lavoy and Tracy Thresher were doing a presentation on Supported Typing, which I really needed to go to in order to assess whether this might be something we could use to help Em communicate more effectively, but next door to them was Nick Pentzell, Hope Block, Jacob Pratt and Autumn Dae Miller presenting “Rated “R”: That Oh-So-Difficult Topic”.  I cannot tell you how much I wanted to hear them too and later heard from others that it was a not to be missed presentation, sadly though, I missed it.  Human Development Journey was presented by Cecilia Breinbauer about using DIR, which was the method Richard and I were trained in by the late Stanley Greenspan, after abandoning ABA.

Ari Ne’eman

Jennifer Paige Seybert

That evening after dinner and a wonderful performance by Jordon Ackerson who reminded me of Emma because of his beautiful voice, we watched Wretches and Jabberers, with a Q&A with Larry and Tracy.  This was my third time watching this documentary, which I posted about last month ‘here‘.   I asked them about self-injurious behaviors, something both engage in during the film.  I asked for  their opinion about the commonly held belief by many that SIBs should be thwarted and how parents and caregivers are often unsure how to deal with this.  Tracy typed, “That was years of frustration with no way to reliably express myself working its way out through my behavior the problem was lack of communication which pissed me off.”  Larry typed, “I lived in an institution so I was locked in arms of restraint its legal but immoral and only represses anger nothing looks more kind than softly spoken words and lit up smiles.”

Jordan Ackerson

Tracy Thresher

Larry Bissonnette

Read that again.  “… nothing looks more kind than softly spoken words and lit up smiles.”  The presentations were terrific, but it was what is possible that this conference represented, which affected me most profoundly. The AutCom conference was an example all organizations, who say they are interested in Autism and helping those who are Autistic, should follow.  Autistic people make up a large portion of their board, Autistic people led more than 50% of the presentations, the audience was at least half Autistic, if not more.  At my presentation there were more Autistic people than not, for which I was truly honored by.  The conference showed what the world could be like if we work together, reach out to each other, include everyone despite our perceived differences with love, compassion and kindness.  Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together.  Accommodation and inclusion means we ALL benefit.

Overwhelmed

Overwhelmed.  That’s how I’m feeling at the moment, with no real right to be.  Nothing has happened, Emma continues to make nice strides, yet even as I say that, a little voice is muttering, “Really?  Is she really making strides or are you just grasping at straws to make yourself feel better?”

Sometimes I just want to rant and whine and complain, yet as I write this, I know that’s not really what I want.  Okay, maybe a little. But it’s more the feeling of wanting to turn the volume down in my head.  If they had a worry lobotomy I think I’d sign up.  Or maybe that’s what a lobotomy is.  I just don’t want all that other nasty stuff that comes with a full lobotomy, just take the worries away, thank you very much.  What I really want is to not feel this way.

When Emma was diagnosed and still two-years old I remember after a long training session in which Richard and I were supposed to continue with her ABA program after the seventh or eighth therapist left our home for the evening, I thought – I don’t want to be my daughter’s therapist.  I want to be her mother.  Being her mother doesn’t seem to rate high on the importance scale of most of these methodologies.  A few years later when Richard and I went down to Bethesda and trained with the late Stanley Greenspan in his DIR/floortime, I felt the same way.  After Stanley advised us that we should each be doing seven or eight 20 minute floortime sessions with her a day, I thought – I don’t want to run interference, constantly launching questions at her to encourage language like rounds fired from a .44 magnum.  (Yeah, I just googled that, because I’m completely insane AND a stickler for accuracy in the similes I use.)

The point is – if I’m being perfectly honest – I’m feeling a little lazy at the moment.  But laziness with an autistic child is really not something I can afford to be.  I mean her life is hanging in the balance while I’m whinging about how I don’t want to take the time to map out her next study session.  (Don’t you love it when people use words such as “if I’m being perfectly honest,” and “frankly” and “truthfully” or my personal favorite, “if truth be told” ?  To preface a comment with “Truthfully” implies that one is NOT usually truthful, which, for some reason, strikes me as hysterically funny.  Okay.  I’ve had my moment..)

I know that feeling of overwhelm is like fear, or worry or any number of other emotions that do nothing positive, in fact serve only to keep me deeply embedded in the stagnating cycle of fear and worry, like air that’s being recycled through a dirty filter.  (Stop with the similes!  This should be said in a high pitched Monty Pythonish voice.  But I can’t help myself!)  I know the only way to break out of this is to do the thing I keep putting off doing.

Just do it.

I know.  I know.

I think I’ll go make a list.

It will be a very long list.

I hate long lists.

Ugh.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

Joe

Yesterday Richard, Emma, Nic and I went to a post wedding party for Joe, Emma’s therapist and Joe’s wife, Angelica.  It is always interesting going to a function together as we never know how Emma will behave.   Will she have a meltdown?  Will she insist on leaving right away?  Will she be so utterly unmanageable that we spend the entire party racing around after her?  When it is a dressy affair, one with speeches and food, which she will have no interest in, it becomes all the more worrisome.  We knew we had a better chance things would go well by the very fact that this was a party for Joe and Emma adores Joe.

Still, we did our best to prepare her before we left.

“We are going to get dressed up, then take a taxi and see Joe!” We told her.

“See Joe!” Emma repeated, nodding her head and twirling in place.

“That’s right Joe and Angelica,” I said.

“It’s a birthday party,” Emma concluded.

“No.  It’s Joe and Angelica’s party celebrating their marriage,” I said, not sure how else to describe a post wedding brunch.

“A wedding-birthday party,” Emma said.

“Well, sort of.  But it’s to celebrate their getting married,” I explained.

“Okay,” Emma said.

“There’s going to be food there and lots of people…” I said.

“And Joe and Angelica!” Emma interrupted me.

“That’s right.  Joe and Angelica will be there.”

“Angelica!  Angelica!”  Emma sang as she twirled in place.

“And there will be a few speeches and we will see a video and then we will come home and change,” I continued.

“Go to Chelsea gym bowling,” Emma said.

“Yeah.  Okay.  We can go bowling at Chelsea Piers afterward,” I said.

“Go with Mommy and Nickey and Daddy,” Emma said.

“Exactly,” I said.

“Okay!  Emma put on a party dress,” Emma said.

“Yes,” I said.

The party was lovely and Emma was terrific, on her best behavior.  Joe’s niece was there, an adorable two-year old in a party dress similar to Emma’s.   They ran around together, though in truth it was Victoria’s exuberant friendliness, undeterred by Emma’s less than attentive response to her, which kept their interactions going.  If Emma sat down, Victoria sat down next to her.  When Emma took her shoes off, off came Victoria’s shoes.  When Emma ran around the room waving her arms, Victoria followed waving her arms as well.  It reminded me of how neuro-typical children behave.  They follow the older child and often mimic them.  Emma never did that.

People ate and chatted with one another.  Both Nic and Emma ran around with the two other children there.  Then Joe stood up to give his speech.  Emma sat down and remained quiet as he spoke.  It was a heart felt speech, incredibly moving and left many of us in tears.

When it was my turn to give a speech, I pulled out my notes.  I had decided, when considering what to say, that perhaps I would use at least some of my time explaining exactly what it is Joe does.  I think it’s easy for people who know nothing about autism to assume he is a glorified babysitter.  Someone who hangs out with Emma and takes her to the park.  This could not be farther from the truth.

When Richard and I went to Bethesda to train in the DIR/floortime method with Stanley Greenspan, who invented it and his son Jake, we were exhausted before the day had ended.  Attempting to engage and evoke language from an essentially non-verbal child who is uninterested in any form of interaction is like nothing I have ever done.  It is physically and emotionally exhausting.  It requires a creativity, quick-thinking, concentration, focus and patience most people simply do not have.  Richard and I have met hundreds of therapists over the years, some have it and many more who do not.  The idea that anyone can effectively work with autistic children is just not true.

Joe is the ninja master, the autism whisperer.  He has a talent for it, an intuitive sense, which I have had the pleasure of observing many, many times.  Joe is not just a gifted floortime therapist, he is also a well trained one.  It is a formidable pairing.

And yet, what I have witnessed time and time again is how Joe and others like him are undermined, their work is seen as little more than babysitting, their profession consistently undervalued.  Devoting ones life to helping children with special needs is a noble calling.  Joe is royalty among the noble.

It was with these sentiments that I rose to give my speech.  I cannot say I got through it flawlessly because I did not.  I stumbled and I had to refer to my notes, I choked up several times and at one point had to stop speaking, as I was completely overwhelmed with emotion.  But mostly I wanted others to understand the importance of what Joe does everyday.   Joe has transformed Emma’s life in untold ways.  His commitment to her, his dedication to her has formed who she is and who she will become.

One story I forgot to mention yesterday was when we were having a hearing with the Board of Education.   Joe had testified as to what he does with Emma.  Richard and I had also testified regarding Joe’s contribution.  During the final cross-examination by our attorney of the attorney for the Board of Education regarding some of her arguments, she looked up from her notes and said, “Well I don’t know.  I’m not a Joe Kennedy.”

When I am with Emma during one of her legendary meltdowns I am fortunate if I have a momentary reprieve when I am able to ask myself – what would Joe say or do in this situation?  The times when I am able to emulate Joe are the times I know I’ve done the right thing.

Rules

Emma can be very strict.  She is a stickler for rules.  Merlin (see yesterday’s post) is not supposed to jump up onto the counters or dining room table.  If he does, Emma shouts, “Merlin!  Get down!”  Even if he hasn’t jumped up on the counter (yet) Emma will remind him, “Merlin!  You may not get up on the table.”

If we have a vase of flowers on the dining room table Emma will repeatedly warn Merlin (whether it applies or not) “Merlin, kitty, you cannot eat the flowers!”  Then she’ll laugh.

These are all things she has heard us say at some point and Emma is a terrific mimic.  She will not only repeat the things she hears us say, but she will mimic the tone.  There’s a word for what she does.  It is – echolalia – common among autistic children.  Echolalia is the parroting or echoing of sentences and phrases heard.   Emma does not make the sorts of linguistic mistakes commonly heard in young children.  She does not say things like – I bringed it to her – something often heard from young neuro-typical children as they try their best to navigate the English language.  On the other hand Emma will say – Bye Emma! When saying good-bye to someone, whose name is definitely not Emma.  It is what she hears them say to her when they or she is leaving.  Why would she say anything else!?  To Emma “Bye Emma” means a parting of ways.  Or, as in the case of a dinner party we had a few months ago, Emma felt it was time for everyone to leave, she announced – “Dinner is all done!  Bye Emma!”  When our guests, understandably confused, said, “Oh!  Are you going now?” but did not themselves show any sign of leaving, Emma began bringing them their coats, saying, “Bye! Bye Emma!”  while vigorously waving her hand good-bye.  Needless to say she cleared the place out within minutes, despite our reassurances that it was not time to go yet and wouldn’t they like to stay and have some coffee or tea.

For Emma, however, we had eaten, she had patiently waited while this occurred.  She knew there would be dessert after which she would be allowed to blow out the candles on the dinner table while singing “Happy Birthday” (Any party is a birthday party and remarkably some guest almost always is about to have or has just had a birthday – so it confirms Emma’s ‘party = birthday party’ theory.)  Once Emma has sung Happy Birthday, usually several times and with all of us joining in for the third or fourth “last time” rendition – it is time to go to bed.  Emma has a difficult time understanding that we may not be ready for bed.  We may want to move into the living room to talk, have some tea or coffee and enjoy each other’s company.  This, for Emma, is not how it should be, it is her bedtime now and so it should be everyone elses too.  This sort of flexibility does not fit into her “rules”.  The guests should leave and if they do not, then Emma must remind them.

When Emma was beginning to talk she did not say single words, but whole sentences.  See previous post – “Emma at Ten Months Old”.  As Emma grew older, she would repeat things she heard others say.  But the things she latched on to were things said with a great deal of emotion, or, as Stanley Greenspan used to say, “high affect”.  Sometimes these comments were in context, but other times they were arbitrary.  A dear friend of mine who has two children just a bit younger than mine admonished her son in the playground one day while we were there.

“Rogan NO!”  She shouted, as her son dashed toward the gate leading out onto 10th Avenue.  Emma, for the next four years mimicked her in all sorts of situations.  Often it was when she wanted to go somewhere, but knew she shouldn’t, but just as often it was arbitrary.  Emma would shout, “Rogan NO!”   Sometimes she would add  “You have to come back!”  And sometimes she would just use the short hand version  “NO!”  But we knew from the way she said it, the tone she used who she was mimicking.  She had captured the voice perfectly.  A few years ago we ran into my friend with her children in the park and Emma upon seeing her, immediately said, “Rogan, NO!”  Fortunately my friend has a good sense of humor and didn’t take offense.

Emma does the same thing with another friend of ours.

“Jack!” Emma will shout in a stern voice.  Then “Jack!  Jack!  Jack!”  Said in rapid succession.  She captures the child’s name and the anxiety ridden pitch perfectly.  At Nic’s birthday party a few years back, Emma, upon seeing Jack’s father, started shouting – Jack!  Jack! Jack!

“I guess that’s how I sound, huh?” The father said, looking slightly embarrassed.

How to explain?

For Emma, rules help her cope in a world run riot.  Rules provide sameness and from that, Emma derives comfort.  Though Emma has been known to question some of the rules she does not like.  “We cannot make pancakes,” Emma will say, knowing it is a school day.  She hopes maybe we will make pancakes anyway and this is as close to a question as we often get.  But once confirmed, “No we cannot make pancakes this morning.  It’s Wednesday,” one of us will say, Emma will begrudgingly accept this.  It is our rule after all.

“Sleep, wake up, sleep wake up, sleep wake up, pancakes!” Emma will respond.

“Yes.  That’s right.  Pancakes on Saturday and Sunday.”

“Make pancakes with Mommy?”  Emma will say with a sly grin, trying one last time to see if this ‘rule’ can be suspended if for only one day.

“Pancakes with Mommy on Saturday.  Today is Wednesday.”

“Okay,” Emma will say.