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Workshop Series for Museum Professionals

Museum Access Consortium Seminar

Transcript
A Presentation by Irene Cavanaugh Hussani
at The Metropolitan Museum of Art
July 27th, 2011
Rebecca McGinnis—Access Coordinator, Metropolitan Museum of Art

We are getting started now, just an FYI the clock in the room is not correct. It ‘s later than you think. So welcome everyone, welcome to the Met. And to this MAC seminar we’re delighted to have such a great turn out this after noon.  I am Rebecca McGinnis and I oversee Access in Community Programs here at the Museum and co-chair with Ken Struve the Museum Access Consortium. And just before we get started with the meat this afternoon I just wanted for any of you who happen to be new to MAC I wanted to just tell you a little bit about the Museum Access Consortium. MAC has existed over a decade and we are really a loosely configured network museum professionals and people from the disability community who are dedicated to improve accessibility to all cultural institutions not just museums for people with different abilities. We provide primarily professional development workshops and meetings for the cultural community of New York City and surrounding vicinity and this is an example of that. And by the way we are very grateful to the FAR Fund for supporting this initiative focusing on Autism Spectrum Disorder this is the first of four seminars we‘ll have throughout the next several months. If you are new to MAC and you’re not on our mailing list please be sure to sign up at the back of the room, on the little table by the door you can leave us your email address. There are various ways to stay connected, you can see the website that is hosted by City Access New York, you can attend these workshops find out about what is going on with MAC through our Face book page or Twitter, I am sure I’ll leave some things out, subscribe to our email blasts, that come out periodically, to let you know not just MAC related issues or MAC events, but of other things that might be of interest to you. So be sure to sign up, in the back of the room if you are not on our mailing list already and not receiving information. So now I’m going to go ahead and hand over to Cindy Van den Bosch who is the project coordinator for this Autism project who will introduce Irene Cavanaugh our speaker for today. Thank you!

Cindy VandenBosch—FAR Fund Project Manager

So I’d like to start out by just thanking all of you for being here today. I think we should give ourselves a round of applause for coming out.  I really think this is a testament to the need that is out there for museums to accommodate visitors who have Autism and their family members whether it is for recreational purposes museums can also provide or be an educational resource or could even be a place for community building. And I think what we are super excited about with this grant is it is a three-year grant from the FAR Fund and the Museum Access Consortium is going to really try to build and create a community of museum professionals that are sharing their best practices, sharing their experiences, as they work with both children and adults who have Autism in their families and there are many ways that we’re hoping to do that. One way, as Rebecca mentioned in the introduction, is that we will be hosting this workshop series. So we hope that you will be at the following workshops as well, the workshops the purpose of them will be to hear from experts like Irene Cavanaugh Hussani who will speaking with us today as well as the next workshop, and also to share some of our own experiences. We will be documenting these workshops so we’re making an audio recording, which we will put up on the Museum Access Consortium blog. We have a blog that is specifically dedicated to New York City cultural institutions increasing autism or increasing accessibility for people who have autism.  There is a site we really want to provide information so that other museums around the city can learn so that we can all learn from one another.  So we will be posting an audio recording from today, there, we will also be posting a transcript there as well as recordings both video and audio of other sessions that we have over the next year. Speaking of that blog, I know that there are many museums, just from talking to many of you and knowing many of you, and the institutions that you represent, I know that there are many museums that have experience in working with people who have autism and that you’ve already adapted programs and have had great successes, and if you are interested in contributing, you want to be a guest blogger on that site and share your experience. I think the more information we can put into the Museum Access Consortium blog that is dedicated to accessibility for people with autism the better. And it will raise the visibility of New York City on the whole, that we really care about being as welcoming as possible.

So without further adieu I’d like to introduce our presenter, Irene Cavanaugh Hussani, I’m so excited that she is here today to speak to us and she has so much background and experience she has been working in the disabilities field for 28 years, she is currently the director of family services at the Eden II Programs, which is an institution dedicated in to enabling children and adults who have autism to achieve the highest quality of life through out their lives. She received her Master’s degree from Long Island University in Special Education and also her certification in School-building Leader and School District Leader from the College of St. Rose in Educational Leadership and Supervision. She is currently pursuing a doctoral degree in Educational Leadership from Concordia University. And she has presented at local and national conferences on a variety of topics related to: Autism, Applied Behavior Analysis, and Multicultural Sensitivity.  She has served as an adjunct professor at both Brooklyn College and College of New Rochelle; teaching courses in Early Childhood Special Ed as well cognition and instruction and is active in the development of Special Education programs in the Middle East. So we like to thank you so much for coming out today.

Irene Cavanaugh Hussani

I guess I have to turn the mike on, although I don’t think I need the mike.  But it is being taped, so we’ll put the mike on. Can everyone hear? And everyone who has a device, hear?  Are all the devices working? Okay good. Well, thank you. And thank you to the team back there and thank you to MAC for inviting me, and for the FAR Fund, because as a grant writer and director of a program that uses grants and is supported by grants; we thank them.

I ‘d like to start with getting to know a little bit about the people in the audience. Writing a talk for a group of people you never met before and who sign up in the weeks before the talk, can be a little daunting.  You don’t want to talk over people’s head or you don’t want to talk under and you want the stories and anecdotes to kind of match. So I know you are museum educators, museum curators. But I’d like to know a little bit about your experiences with people with autism. Is there anyone here who is a parent? Anyone here have a sibling or relative?  Anyone who works with people with autism?  Okay good. Given the statistics, I think that autism is touching more and more people’s lives so when I ask this question 15, 20, 25 oh by the way 28 years. Oh I have to take that out. All right I’m done. I’m so done this. Great I’m in the field 20 years you how and now it is 28. People can count you add 22 with that and I’m not thrilled, I just aged myself. Years and years and years ago, in the dark ages, we would say that and people had never met. . . you had but they just weren‘t diagnosed, diagnosing has changed and it is changing again, by the way, the DSM 5 is coming out so everything I’m covering today in 2 or 3 months is going to be outdated . So we’re in the moment and we will just go with what we have.  I am just going the start the talk and feel free to ask questions, as we go along. And if you’ve heard it before; I attend talks on autism all the time because I always hear something I can use in my talks. Or I think about something a little differently. I’m going to talk about the goals of the talk. My one goal would be to have you maybe change the way you think about people with autism. We all have . . . I didn’t put any You Tube clips in, there are no pictures. And the reason I didn’t put any You Tube clips in is because, one, I’m not that good with technology and it just caused my anxiety level rise to a level I just wouldn’t be able to speak. Also, I don’t want you to have a picture of a person with autism. I want you to have a picture, no, I want you to be able to approach a person who has autism, notice I didn’t say an autistic person, and have an open mind and look for those things . . . I would want people to see my strengths, I have lots of weaknesses am going to be the only one who finishes her doctorate and can’t do math. So, we all have weaknesses. I have a great finance department, so I don’t have to worry about that, so I compensate, they compensate for me…I feed them, nice to the finance dept., this is what you do.  So you compensate. So you want to focus on people’s strengths. But understand that there are characteristics of people with autism that will be shared and they might present themselves a little differently, but there is an expectation that there are some characteristics of people with autism share, but there is not a prototype. You all know that I know you all know that. We think of the guy down the block with autism or we think our cousin with has autism.  A lot of people that work with us when they first come and they are first teacher’s assistants they go, ”Well he doesn’t look autistic like how come. He is really friendly, hugged me and then we do this version of this talk and they go “oh” and that’s this “ah ha’ moment. And if you have one  “ah ha” moment then it is worth the time.

Okay, so we’re going to be covering these things, “history of the disorder”, I don’t always go in this order so I might stuff, but I’ll go through the all the slides just to make sure I covered everything. If I talk to fast, everything on the slide if you write it down it is there. It is all on the slide.  Characteristics, misconceptions . . . “Autism typically appears during the first three years of life.” (This is a directive.) So, okay there’s a mike if you want to be on a mike. True or false? True! It’s true! And this is deceiving because sometimes, I worked overseas over a number of years and we sometimes didn’t see the kids until 5 or 6 or 7 years old, until they go “that’s how he is now” But when you ask the mums, the dads or the nannies, what happened before 3 they will be able to describe it, before 3.

 “Autism is the third most common developmental disability, more common than Downs Syndrome.” True. True. Yeah. It is, yeah. And here is the thing.  You can see people with autism don’t look any different than you or I. When you are in a center or something, the kids with physical disabilities or Downs Syndrome kind of pop out to you. But it is true.

 “Over one half million people in the U.S. have some form of autism.“ True. This is the math question, because if it is 1 in 110 births, so you go (she imitates sound of calculator). So I just take their word for it, I can’t do the math, but I believe them.

“Autism is 4 times more prevalent in boys than in girls.” Some of the literature says 4 to 5 times. Okay so . . . It is, if you look in our classrooms, you have a school, right, you’re looking around the classrooms you are seeing boys, boys, you see a girl here or there. But you really see boys. Funny story about going to the Museum of Natural History, they raffle us off once a year, and so the administrators take the kids, so here we are all of the administrators, yeah well we really had a great time. Except that we walked in and here we are with like 10 administrators and 15-16 boys and then somebody had to go to the bathroom and we realized oops! And we are so use to seeing, and I said I’m married I’ll go into the boys room I don’t care. But we figured it out. But we’re gonna talk about that next time, how we could have worked that out before hand. And I won’t go into that. . .we learned, we learned.

“Autism was first thought to be childhood schizophrenia, then realized to be a developmental disability.” True or False. ? True, true! In the institutions people were all kind of lumped together.  And it looks like childhood schizophrenia, it looks, it presents, until you know the difference-and back then they didn’t know the difference.

ABA has been shown to actually change the brain by creating new synapses.”
Applied Behavior Analysis is teaching techniques strategies of philosophy of education-so take a guess . . . True, true. That’s what the literature says –there is literature support the use of Applied Behavior Analysis with people with autism.

“There is a scientifically proven effective treatment for autism.“ Everybody says “False” and I always get people on this one. I love it. And I underlined treatment and you still say “false”. There is not a cure, but a treatment. So it’s a treatment. Can they improve with it? Not a cure, but a treatment.  So that’s the key word. That’s my favorite question.

“Research and clinical practice show the most effective intervention with individuals with autism involves the ‘wait and see approach’.“  False. But the thing is that many pediatricians . . . and honestly one of the advantages of being in the field this long is, you see a lot less of this. You know many pediatricians refer.  But in the olden days you’d hear, “it’s okay, just wait. He’ll grow out of it.” And certainly I used to hear moms and grandmas say ”his father didn’t talk until he was 3, 4, 5 years old let’s wait and see it will work itself out.” Well, if you had an ingrown toenail that was getting worse and hurt and hurt you would you wait see if the thing got more infected? No, you’d get . . . on a simple level we don’t wait to see if things get worse or get better, we address it.

“Children with autism can demonstrate learned skills in one environment or with one instructor and fail to demonstrate these skills in other environments.” Yeah, yeah that’s a very interesting characteristic, so you know, it’s true. Even for us as educators, when we bring people into different environments or when we bring people into the community.  You may not know if they are going bring those things that we’ve practiced or learned into their new setting.

“So what is a developmental disorder?” {This is one of those slides, I didn’t know whether to include it or not include. Am I insulting people? It’s a disorder in these areas, it’s one of these three areas. It starts before 22 years old and lasts indefinitely your life span. So, if you have an accident at 40 years old, like a stroke or something you’re 40 it is not before 22 years old. It would be categorized differently and we’ll talk about categorization later. ] ASD, pervasive developmental mental disorders, autistic disorders, Retts disorder, childhood disintegrative disorder, Aspergers, and PDD and NOS.

I had the director of Psychological Services read this over, yesterday and he says me, “So how long is this?” I said,” Two hours.” He said, “ you talk”. So I cut, but not this, and he said, “ you should cut this.” “why should I cut this?” And he said because “in the new paradigm this is not going to be cut up like this. Aspergers is not going to be there it’s going to be needs more support or less support. How did they put it? They’re going to say Autism, and I hate the word high functioning or low functioning, It will described as to the type of the assistance needed and not given these type of labels.

So why labels?  That was a good segue. Positive aspects — parents resist labels, they really do resist labels and I would too if I were a parent. You have to think about this, would I want my child labeled? Well the funding follows the labels. So it guides appropriate intervention and gives parents relief and direction. It really does because a lot parents come and say,  “I finally know what it is.” You can’t address the boogey man, you can’t address something you don’t know. But if you have a name to it you can seek out strategies and interventions for the thing that you have. But if you don’t know what it is it is like searching in the dark.  Establishes realistic expectations, facilitates communication— and that is an important as a professional in the field. Before I see somebody I am reading their reports. I don’t just walk in and haven’t read. And so you get an idea of the person, a description. Guides research, paves the way for increased funding. We were really lucky over the last 5 to 10 years. I thought I was a really great grant writer and it is probably because a lot of money was coming to autism. I probably didn’t have much of competition and there was a lot of money out there. You’d write a proposal for services and the funding was there because legislators were made aware of the need in the community for services for people because of the growing population. And identify with other people. We have a socialization group on Friday night and we’re going to Great Adventure.  I have an ulcer right here, I’m going. By the way I’m going —the thought of sending them on a Friday night to Great Adventure it’s more than I can handle.

May create a social stigma . . . these are the negative affects. And yeah, because people like to label. “You are this” and “ you are that”, so we’re not. It is not an autistic person it is a person with autism. I don’t want to be defined in one way. May lead to decreased in expectations. “Oh you know . . . “ You hear this. “Well you know he has… “ I’m thinking well someone who is not identified with a disability or who has a different disability…well let’s find out. Let’s learn about that person and find out the potential is and push the envelope a little.  Creates the concept that the person is nothing more than the disability. We’ve talked about that. May impact on self -esteem and may lock the individual into a certain life style or educational track. Do we have educators here? I noticed on the list we had some D 75 people here. Are there any District 75 people here?

So here is the definition and it is diagnosed through clinical observation and using the Diagnostic Statistical Manual of Disorders, which is at number 4 but number 5 is coming out very soon.

It is a developmental disorder; we already talked about it as diagnosed within the first 3 years of life.  It is characterized by impairments in socialization, communication and stereotypical behavior. So the new one in 5 is going to kind of  combine A and B. In that the definition will look more like communication and language as it affects socialization.

Are you taking questions? Yes?

Q: Why do you think the writers of the DMD 5 thought that was important to make that change?
A: Because it is, because it goes together. Language is social. I can’t read their minds, but in my head it makes sense. Language is used and you’ll see it described later. Like you can use language, you can have language, you can use it. “I want this. I want that. Give me this I want to go here.” But it is not social.  And so, language used to get things is different than language used to relate to people.

First concerns:

  • Speech is absent or less than peers
  • Poor eye contact
  • Poor response to name
  • Tunes people out . . . so what happens is the parents of little kids will bring the child to pediatrician.  The pediatrician will check hearing; speech therapists are really good at, they get sent kids who later get diagnosed with autism, because they say they aren’t hearing so they have an audiological exam and they have speech exam.  And they realize it is a little more than that. 
  • Doesn’t point to or otherwise direct parental attention to objects of interest. It looks like if you have a 3 yr old who sees or a 2 ½ year old sees a plane up in the sky. They would say, “Look Mommy, look Mommy plane, pane, plane” But this child would enjoy looking at it, but not want to share it with you, not want to bring you in his world to share it with you.
  • Unusually long and sever temper tantrums, longer than unusual temper tantrums.
  • Repetitive, odd, or stereotypic behavior. 
  • Unusual attachment to inanimate often, hard objects, flashlights instead of a teddy bear. Carrying things around. I look at Mums, one of the criteria often is interest in parts of objects. One Mum came in and said to me, “he loves Match Box cars, he always has Match Box cars with him. “ I am observing the child, it’s not the Match Box cars, it was the door that opens and  .  .  . by the way I love the doors that open . . . I love the Match Box cars , my favorite Match Box cars are the ones with the moveable parts. But it wasn’t Match Box cars, because in the absence of the Match Box cars he’d replacing that behavior with . . . you know. 
  • Prefers to play alone
  • Doesn’t play with toys the way other kids do.
  • Doesn’t engage in pretend play.  And pretend play is very social  “I’ll be the Mommy you’ll be the Daddy.” 

Screening for Autism:

Studies indicate that first reported parental concerns appear around 18 months of age. But here it is, with definitive diagnosis often later. Even though is says diagnose before 3, it is not always diagnosed before 3.  Except that we are diagnosing earlier and earlier.  I just happened to be at Autism New Jersey Conference in October in Atlantic City and I just happened upon this woman who was presenting her study and she had videotape of a little 6 or 7 month old little boy, and it was obvious in hind sight or obvious to us, but I wasn’t in this room, but  watching this tape . . . that it was very clearly this 7 month old child was not responding . . . he was not giving his mother eye contact, not responding to her voice, she was sitting at a desk he was right in front of her. . . then there was another one, three, four, five months later and he wasn’t tracking objects, he wasn’t and then by then he was looking past her, and not engaging, and doing this with a cup holder. And I felt that was really young and she captured it.  Her point was, it was a talk about the indicators that you see at very, very young ages and how they are able to diagnose at very young ages. This kid was at 7 months old, but I think he had a sibling with Autism and that was even in the study, so he was already an at risk child. 

Underway to improve a way for pediatricians to screen. It would be nice if pediatricians, we don’t expect pediatrician to diagnose, but certainly to refer earlier, refer to testing, refer out even to a speech person or audiologist.

Here is the diagnostic criteria as it is written today. Not to trivialize it but it looks like a Chinese menu. Two from column A one from column B.  We can all go in and have Chinese food but our meals would look different depending on what we choose. A person would look different even if they had the same characteristic it could manifest itself differently or they could have characteristics in the same category and be diagnosed with autism but still look different.

  • So marked impairment in the use of multiple nonverbal behaviors such as eye to eye gaze (we talked about that already), facial expression, body posture and gestures to regulate social interaction.  So you see where social . . .here is when communication comes in. When we are communicating, I am going to stand close to you. It is cultural as to how distant we stand from someone, we get that, but with people with autism we might see standing way to close, not looking at you, I look at you, you look at me, you smiled you see, I looked at you and you looked at me and smiled. It is that kind of reciprocal kind of a .  . . it is that kind of stuff that is connected to language. When I say, “ I’m sad today” (said it with a happy sounding voice) you’re seeing a disconnect because we don’t smile when we’re sad.
  • Failure to develop peer relationships appropriate to development level. This one is interesting because again our TAs, our teacher assistants come in and they say, “Well he talks to me. We’re talking to each other all day long.” Like he’s 13! A typical developing 13 year old doesn’t want anything to do with you. So it’s important, develops peer relationships, it’s deceiving. I love the questions, they’re thinking and they want to understand. When our TAs come in and they say, “I don’t get this.” Then we have the opportunity to explain it.
  • A lack of spontaneous thinking to share. We talked about this.  And a lack of social - emotional reciprocity.  You see a baby crying in a pram or stroller and you see a toddler go up, and the baby is crying crying and you see the toddler starts with the boo boo face and then the toddler is crying. And you think, “Why are you crying?” “The baby is crying.” There is that emotional connection that happens. I’ve seen a child with autism go up and kind of look at them and “why are you acting like that? “ But there is no connection to the fact as to what they are feeling.

 Child must show at least one. In these three categories we want to see about 6 things; 2 must be from social, one must be from communication, one must be from repetitive so that’s 4 then 2 others from any other category.

  • Delay in and total lack of development of spoken language, not accompanied by the attempt to compensate. So sometimes we see a delay, sometimes we see a lack of, and sometimes we see a delay and then they kind of come back and have language. But often what I hear, the children I work with the parents want applied behavior analysis as the teaching strategy there are also families who have not found that their children have shown progress in District 75 schools, and so they come. Typically our kids need a lot, a lot, a lot of support. And have severely challenging behavior, so my examples tend to like this. So a lot of times we hear “he had about 50 words by the time he was 20 months, but then it started going away.” “He used to say this and then it started to go away.”  For some kids we get speech back, we see that receptive language is better than expressive, but if they really want something they come out with it.  So there is a big variety.
  • Individuals with adequate speech mark an impairment in the ability to initiate or sustain conversation.  That’s a lot of the stuff we work on. You can have speech, but it’s the “Hi” “Hi” “How are you? “Fine.” “How are you?” and it’s very rote and very and if you are not continuing it just stops. And this happens an awful lot. As I walk around the school I go to the mailbox and come back it is interaction after inaction like that.
  • Stereotyped and repetitive use of language, idiosyncratic language.

Idiosyncratic language: when my kids were very little I’d say to the babysitter, “When they say this, this is what they mean.” And that was appropriate for their developmental level. Very often when mothers come in they say, “ When he says that, he wants this.” It is helpful to us because then there it is a proactive approach to warding off behaviors, because of the frustration of not being able to communicate.

  • Lack of varied, spontaneous, make-believe play or social imitative play appropriate to developmental level. How do we learn? We do learn a lot by imitating. Your kids learn how to eat appropriately by sitting at the table. I always think of Pretty Woman when she looks at what fork he is using.  She’s at the table and she doesn’t know which fork to use and she’s counting the prongs and looking and he picks up the fork, and she goes “ahh” and got to imitate and that was a learning strategy she could use and understand. But not here.
  • Child must show at least one of the following restrictive, repetitive stereotypes; encompassing preoccupation with one or more stereotyped or restrictive pattern of interest that is abnormal either in intensity or focus.

What we do when we see this in the school, we understand that, we respect that, but maybe that toy needs to be put down while we’re working and they can earn that toy back. We’re going to be doing puzzles or some math stuff well you want this thing that rattles well . . . you’re reinforcing the behavior. We see intensity in the focus… redirecting behavior in autism is a challenge because of this type behavior.

  • Apparent inflexible adherence to specific nonfunctional routines or rituals.  We all have routines and rituals. But they are generally functional. You get up and brush your teeth. You put the light on, but you don’t flick the light on and off for 20 minutes and Mom can’t get you into the bathroom to bush your teeth. That’s the difference between functional and not.
  • Stereotypical and repetitive motor mannerism, hand flapping, twisting. And you’ve seen this.
  • Persistent preoccupation with parts of objects. So what may look like preoccupation of an object may not be, it might be a part of an object.

[Referring to cdc.org website] So here’s –I found this the other day, I liked it because when you diagnose someone and see somebody with autism-this is a person, but if you move that first little bubble anywhere on the spectrum it becomes a different person. And if you move it over a little bit more it becomes a different person. Then you move the second one, third one, fourth one and fifth one that you get a profile of a picture who is very different although all have the diagnosis of autism. I thought that was great. I’m going to use it forever-thank you Center for Disease Control. It was a good website for understanding.

Here are associated characteristics seen in some individuals with autism but not all. Any comment that says “all people with”…we hate. Even more we hate all people with autism are savants. You know “give him a piano he’ll be able….” Rain Man was both good and bad at the same time, because people latch onto that.

Associated characteristics seen in some individuals with autism but not all.

  • Individuals with advanced language skills may take language literally and are unable to understand jokes and sarcasm. I was saying to one of our kids the other day, he goes to the school and comes to our after school program, and it is in the same place. I said [he’s my buddy], “Joe this gentleman [it was an auditor] would like to talk to you about after school. What do you do in after school?”  “Well we went on a trip to...” ”No that is the school program honey, take your school hat off and put your after school hat on.” So what did he say? “I’m not wearing a hat.” I know, what was I thinking? I can have conversations with him, he comes and hangs out. He’s independent in the agency. That is an example. So we are careful in our language to be a bit more literal so we get an understanding.
  • Abnormal sensory reactions either excessive or absent reactions to environmental stimuli.

Here is the Museum of Natural History, here’s another one… Hayden Planetarium who knew there wasn’t enough potato chips for him or me…who knew? It was the first time we had taken little Johnny (not his name) out. We got to Hayden Planetarium, the lights went down…of course we have to try these things out, and honestly in 6 months he might react differently, and we are going to keep trying. It was [screams] closing eyes and so we went outside and walked up and down the corridor. (Audience member: “the seats vibrate”.} And some of the kids absolutely loved it and some of the kids liked part of it. It was a lot of is he going to stay with other kids. And the lights went down, and the lights went up and the shots of light and the sounds… and some people might say “ what were you thinking?” What I was thinking was they should have every experience and why not? And let’s see if it works? And then we should have prepped them a little more maybe. Whenever we get to this I think of Hayden. Fifteen kids, and 15 different responses and 15 different responses to each segment of that., the sound and the lights. . . I’d do it again in a minute. But that he didn’t have a good time was upsetting.

  • Abnormalities in eating and sleeping. This is a problem for parents. The parents are exhausted. The sleeping issues. I have a friend who has a son with autism. And she is on Facebook at all hours and she wrote, “Please, can someone teach little Joey the difference between 3a.m. and 3 p.m.” And then she wrote as her Facebook status: “No, really I don’t want to go swimming at 3 a.m.” I see her in the morning and she suffers, these are real issues. And these are issues when you go on a trip the next day. Or they come into school or behavior changes. I’m a Mum so what do I think of first? “Is he hungry? Is he tired? Does something hurt? How did he sleep last night? And what happened on the school bus?”
  • Self-injurious behavior, aggressive behavior and tantrum behavior.
  • Some statistics:
  • It is more frequent in males than females.
  • There is a strong genetic component.
  • Having another child with autism is about 1 in 20. We have twins and triplets, we have 2 sets of twins in a family. We have a set of twins and a set of triplets. We have one of the triplets and 2 typical. And so we see that a lot in or agency, but at our agency we only serve people with autism. It is a homogenous environment in that everyone has that diagnosis.
  • Prevalence has been found to be about 1 in 110 except in Brick, NJ and it is 1 in 60. They don’t know why, it might be environmental, I don’t know. And this changes it was 1 in 160 when I came back from Saudi Arabia 7 years ago then it was 1 in 150 and I was giving a talk and someone said “that’s wrong.” And it was like from one day to another it was down to 1 in 110.
  • Many individuals with autism also fall into the range of mental retardation. MR is however difficult to assess in this, if you are not sitting to attend to the test and have trouble communicating. If you have behaviors that stand in the way of learning or to be tested, you are going to test lower but it is also going to affect your learning so you’ll test lower. That’s not the only reason, but we don’t know the reason. But it’s true. And when I first did this it was 65% then 75% and it kept changing so I took it out. Because honestly you can go to the NIH (National Institute of Health) or the CDC. And you can get that stat at any point of time and it will change. When I teach college I don’t ask people to memorize these statistics. I ask them to look at statistics and understand how it will affect the classroom in 5 years. We are going to hbe seeing more people with autism. We are preparing for the future. That’s how you use them I don’t memorize them, I use them in this way.
  • It’s a life-long disability although many persons show improvements in functioning over time autism is not curable in the regular sense of the word, but is treatable. You hear recovery . . .make your own decisions. I just read a book, I read 3 articles . . . but I’m in the field, the official word is that it is certainly treatable; curable in the regular sense of the word, no. Individuals with autism live a typical lifespan and present typically. With a lot of our guys as we’re walking in the community, no indication that there is a problem until we’re in a store and a bag of Cheetos ispicked up, and you’re like “no put it down” and thebehaviors come up, and it takes people off guard.
  • There may be cases where a person also has other diagnosable conditions.
  • Issues change over time. And were going to talk a little about infancy and childhood, adolescents and adulthood.
  • Applied behavioral analysis is the only empirically-based treatment proven to be effective with people with autism and supported by the U.S. Surgeon General. There are many, many, many other treatment options and parents come all the time and say “should we do this? Or should we do that? Should we take them off gluten?” We’re not opposed to anything at our agency, but we tend to be an ABA agency and I work there because that is my philosophy.
  • Currently there is no known cause of autism. There is research showing genetic links we talked about that. There are some neurochemical, neurological, biological, environmental findings.
  • It is a biological condition of unknown origins and there is no known  cure or prevention strategy. So people come up to me and say, what is the cause? I don’t know.

Early perspectives

Leo Kanner provided the first description. He noticed in this institution that he worked at, that there were kids who were diagnosed with mental retardation and childhood schizophrenia but there were a bunch of kids that, he tweezed out the kids who kind of looked a like. They were alike but different to the other kids. And because of his work it became a separate disorder. This is what Kanner Syndrome looked like, this is what he proposed: these kids have a delay in speech acquisition, immediate or delayed echolalia, pronoun reversal, repetitive stereotype play activities, compulsive demand for sameness, lack of imagination, normal physical appearance, and abnormalities in infancy. Isn’t that the stuff that we just covered? So this is really cool that he was able to tweeze out the kids with autism from this larger group of kids.

And around the same time there was Bruno Bettelheim was like 1944 or 46 and he was the proponent of psycho -dynamic theory of autism. It was believed that psychiatric disorders are result from unconscious conflicts that arose during the first few years of life. And he presented the “refrigerator mother syndrome”. And he proposed that the whole reason for autism was from cold mother syndrome. And there are movies on it and I’d watch it and I actually met one of the women. And he did a lot of damage to women and to families by blaming. We know now that that is not true. But in the movie, the interviews are really moving; mothers that were just torn apart by being told that they were the cause of it.

So the behavioral perspective: I didn’t go into all of the treatment options. B.F Skinner he did research on applied behavior analysis, it paved the way for research in reinforcement. You reinforce the behavior you increase it; or you don’t reinforce it or you punish it. We don’t do that anymore. In the behavioral approach you are not looking for the cause of autism. It has happened. So you are looking for the function of the behavior. What is the reason for the behavior? Is it avoidance, is it access to tangibles, is it attention? What is the reason for the behavior? Then you’d want to give that reinforcer to them for the appropriate behavior.  So Ivar Lovaas did research in the 60s and 70s and he showed that behavior in children with autism can dramatically improved with early intensive ABA therapy and he looked at that it can change the brain. He looked into 40 hours a week of intensive ABA therapy was meant to, as a treatment option, change the brain, produce new synapses and alter behavior. So we’re looking at the symptoms of the disorder, not curing it, but treating. Applied Behavior Analysis is the application of Skinner’s and the learning theorists.

Applied Behavior Analysis:
Therapists believe that you can change a person’s behavior by reinforcing or rewarding behavior that you want to increase and withholding or not rewarding it. And we do this in every day life. We go to work and we get paid. I also use the “There is a wedding coming up, I’ll buy a new dress if I lose 20 lbs and get into a smaller size.” We do it all the time. We reward ourselves. We have that piece of cake after dinner because we were so good during the day.
ABA has a large body of research to support it with individuals with developmental . . .including people with autism.

Autism in Infancy, in many cases not all-not every infant with autism have these, this is what it looks like

  • failure to cuddle
  • lack of eye contact
  • aversion to affection…this is really sad. We have young Mums, who come in and have a 5 or 6 year old who has autism and we go through pregnancy with them and we all hold our breath and we have two or three Mums who have 2 year olds and they come in and we are saying “hello” and we are assessing. Because you’re looking for a social smile, you are looking for eye contact. You do it naturally, because we are all hoping and praying that they are not the 1 in 20. I have had Mums crying  “he is almost three” and they are crying in my office, because they’ve gotten over the hump. They don’t have to worry any more, but really it looks like this.
  • Decreased crying often mistaken as being good babies
  • content to be alone
  • Often appears deaf
  • Often appears blind
  • They don’t track objects

 Autism in Early Childhood -have problems with:

  • cooperative play
  • imaginative play
  • Friendships
  • Language-I will say that this is on their level, at 2 you should be playing side by side, doing the same thing-partens play. At 3 you should be doing something different, at 4 or 5 you should be following rules. “No, you don’t do it like that. . .you’re suppose to do it like this.”  It’s on their peer level.
  • Language may be absent or delayed
  • Echolalia -can be immediate or delayed. One of our kids comes in and “Hi, Mikey how are you” “I’m good. Look in the sky it’s a bird it’s a plane. . .” I know what he watched yesterday. It’s not about right that second

So if you’re meeting somebody and it’s “hi how are you?’ and out comes a song lyric or a movie dialogue-delayed echolalia, they probably watched it the day before. Or say “hello” say “hello”-immediate echolalia.

  • Appropriate non verbal communication lacking
  • Facial expressions-we talked about that
  • Adverse reaction to change-I had an auditor came in and I have Tony- let’s make up a name-is sitting at table and the auditor said (and this was a strange request), “take him out of his out of his after school group and bring him in I want to talk to him.” I said “Can’t you talk to him while he is in his group?”  and he said , “No, I want to take him out ” He hadn’t had any behaviors in ages and he was like, “no I am  in after school, this is my schedule, this is my routine. I like structure, I’m okay in my structure. I’m okay in what I’m doing.” I said,  “I’m sorry you can’t take him out. You will have to talk to him in here. It is not worth upsetting him. “
  • Ritualistic repetitive behaviors
  • Challenging behaviors.

Really important one:

  • Challenging behaviors need to be continually addressed. When I first started out in the field I’d have to say I don’t have a crystal ball. Parents will come up to you and say.” What do you think? How is the future going to look?” I have a slide on Prognosis, but I say I don’t have a crystal ball. Except when it comes to behaviors. A five year old kicking and hitting is going to turn into a 7 year old if we don’t address the behaviors when they come, because the crystal ball is — the little boy who is thumping you will turn into a 15 -18 year old thumping you. Behaviors are addressed continually and it is important to do that. And things are cute when kids are 3 and 5 but not when they are 7 and 10 and 12.
  • Some develop a seizure disorder-I think this one is sad because I’ve lived through it. A few of our boys just hit puberity. Parents, I always feel for parents, because you go through denial, go through bargaining, you go through all of the stages of loss, Elizabeth Cooper Roth said the Stages, you go through 10, 11, 12 stages and then they get diagnosed with seizure disorder and it starts all over again.
  • Many individuals tend to become more adaptable and behaviorally flexible as they get older, there is kind of an adolescent spurt of behaviors and go over a hump in later adolescence and young adulthood.
  • In others obsessions and compulsions may become more complex
  • Puberity brings about both positive and negative changes-hormones, people with autism don’t have syndromes that change their metabolism-they go through the stages of growing up. Who remembers being a teenager? It was horrible! Some of it was great. Some of it was horrible. But we were able to cry and communicate and talk to our friends and you’re going to go through it.
  • Staff and family must address emerging issues with sexuality. Because everything is typically growing and progressing.
  • Challenging behaviors need to be continually addressed.

So autism in adulthood—I started out with adults in a group home in an ICF in Brooklyn. I think where you start out is where you your first love is. Although I love kids and I love early intervention. Adults are my passion, I don’t know why but it seems...“I am who I am. And let’s just go from there.“ Are we working on maintenance of skills? Yes. Are we working on a little more independence? Yes. There is something liberating about thaiest. So in adulthood if the person is at home or in a group home or an adult program, there is a shift in treatment away from academics towards functional life skills and independence.

  • Age appropriate leisure skills — this is the one I liked for you guys. I like to find out what a person likes and find an appropriate activity to meet that need. Here’s the thing; we run recreation programs and we do trips and we do trips to Sesame Place. So I had a Mum say, she has an 18 year old son who is 6’4” “He likes going there, to Sesame Place.” “ No, what does he like about it Mum? It’s stigmatizing to see a big 18 year old on a little kiddy ride. It is stigmatizing. What is it there that he likes Mum? Can we go to Dorney? Can we go to Hershey? Is it the water? We can go somewhere else to get that sensation.“ The thing that is beautiful about the circus, museum, and shows is that it is for every age. Right? You can find something for every age. You can go back at every age to museums. And you can revisit. You revisit with your kids and you revisit with someobody elses kids and you see it through their eyes and you see it differently every time you go. So what are the appropriate leisure activities and what is not for a certain age group? And that was not for his age group… an 18 year old young man going…but we were able to find other things that he liked. And he was quite happy and because we pushed ourselves to find those other things, more things in his world opened up. He had access to the community. He gained more access.
  • Challenging behaviors need to continually be addressed in the form of behavioral treatment plans or behavioral protocols. Consistency of treatment is the key to success. Even with our own kids. You follow an exercise plan consistently you’ll get results. It’s not rocket science. I was teaching Behavioral Management for the Classroom Teacher when my daughter was about 14 and she looked at the midterm for this undergrad class and she said, “ you know this Behavioral Management, this is all just common sense.” “Thank you, my whole career in one sentence. It’s all just common sense isn’t it?” But it’s grandma’s law; you eat your brussell sprouts, you get ice cream afterwards. Mom says something, yes, yes, yes— what happens the first time when she says you can have ice cream from the ice cream truck? You can never say “no” again; they will wear you down. But it really is important to be consistent.
  • Range of educational placements. What kind of educational placements? Decisions must be individualized is really the key. You’re looking for the least restrictive appropriate environment.  Someone will say, “he is in a residential school that is the most restrictive environment you could be in.”  But if he has behaviors where he is running out of the door at night, parent can’t keep him in the house.  I’m not justifying putting kids in residential schools, but it might be for that period of time the least restrictive environment because he can move around outside of and go in and out of his house and other buildings without fear of his safety.
  • center-based special education schools like Eden II
  • partial inclusion into regular education,
  • regular education with our without support,
  • and residential schools

Employment opportunities-decisions regarding adult employment are also individual. We’ll talk about prognosis and that is key and ties into here.

  • day hab programs
  • supported employment
  • volunteerism
  • competitive employment with or without support. We have a couple of kids in ShopRite and in Barnes and Noble they have support exists from anywhere from somebody who is with them all of the time to somebody coming in once a week to see how they are doing.

Residential Options:

  • community group homes
  • supervised apartments
  • living with families or guardians
  • independent living with or without support or as much support as needed

Prognosis considerations

  • People with an IQ of over 60, presence of language, spontaneous language by age 5 or 6, absence of severely challenging behavior such as: aggression, self-injury, pervasive stereotypic movements, intensive ABA at an early age, are more likely to achieve a higher level of independence.
  • Let’s flip that to the other side you’d see that if someone doesn’t have any language skills, has severely challenging behavior, has self-injury, is aggressive, that person is less likely to be independent in the community and working at Stop-N-Shop or ShopRite. So I’m not saying this a crystal ball, people are people, you cannot plug them into categories this specific because there are ranges of presence of language and so on.

Misconceptions

People with autism are happier when they’re not interacting…they prefer that. So we see that when we go out. People will step away or step back and not interact. People with autism need to be taught social skills. Interaction comes more easily when you have the skills. Anything comes more easily when you have the skills. Comprehensive skills and expressive language skills can develop at differing speeds and often do with autism. I am always very happily surprised when I see a kid…one of our kids he is probably 10 or 11 and he came to us at 5 or 6 and he said, “I want pop pop please” “I want pop pop please?” I almost cried. He had almost no language. I’m not saying it’s anything we did, it probably is, he got intervention, he got education. If you would have asked me, I probably thought he wouldn’t have reached that. Now he is talking in full sentences. It develops at different speeds, because he is an individual. Some people with autism choose to be alone, and some people without autism choose to be alone too. That’s one of those, I say this because sometimes parents come in and they’ll say, “ he’s doing this or he’s doing that” I guess it’s making them crazy and I’m thinking “yeah, that’s typical, yeah”. Sometimes we perceive things with autism blinders on, or the autism sunglasses on. Sometimes a mum will call and say “I have a 3 year old boy with autism and he isn’t toilet trained.” Well okay you know we can give some help but this is not 7 years old or 10 years old…certainly we’ll help. Or ‘he won’t eat anything that’s white. That’s my daughter up until last month, how old is she? 23? You get what I’m saying. Sometimes we have to take off those glasses and look at the kids who are in front of us and see them as kids first. . .as people first. And people first without looking at the autism.

 We’ve covered all these things, but it’s a nice way to wrap up.

Autism is an emotional-based disorder. We know that this is not true; it is a misconception. It is a neurologically based disorder.

Parental characteristics can cause autism. Bruno Bettelheim was not right. You don’t cause autism by being a bad mom. Thank God you don’t cause a lot of things by being a bad mom.

Since autism is biological based, there must already be existing affective medical treatments.

All autism interventions are equally effective. They are not. I will say to you they’re not, they might be effective for some people with autism. But not effective… for instance…gluten free., casein free… Parents will come up and say,” what do you think?  Should we try this?”  A logical answer might be “It can’t hurt, so take some baseline data and know what you are looking at changing. And then start the regime, the diet, and look at it in a month, look at in 2 months and in 3 months and see if the behaviors have changed. If you are getting the results . . . Like: Does this diet work? I don’t know it this diet works for me…but it worked for you, I’m going to see if it will work for me…like Atkins or whatever the diet is. I’m going to try it if I’m not losing weight in a month or 2 or 3 I’m going to stop doing it and go onto another diet, which is that vicious circle. But so you get that, right? All I’m going to say is that for some kids it’s miserable. Here they are not eating anything and they’re trying to get food from others. Honestly these days there are all kinds of things that are gluten free so you could try it out and they don’t have to give up their kids snacks. They are kids first.

It is extremely difficult to teach children with autism new skills. Extremely difficult?  No.

All persons with autism have splinter skills. Splinter skills, I left that in. Honestly I had to think about that one. Splinter skills? They are talking about savantism. All people with autism in some way are savants in some area; and we know that that is not true.

So the next presentation is: How people with autism learn. Cause that is a little more general then you can take with it what you will. Then I’m doing a little tiny study of professionals in the field who take people with autism, people with autism, because we have people in group homes with adults. We have a spectrum at our agency from 3 to 60 years old. I’m doing a little study about 10 questions about what would make a trip to a museum more user friendly for somebody with autism and what’s the diagnosis of your... Here is a preview: cafeterias are a nightmare. Or like I’m not going to call it a time out room, but a quiet room to go and be able to regroup. Or walkie takies-I’m letting it all go.  So what I’m going to ask you please to do is share with me or share with Cindy or put it on the blog. If you have questions about the next talk; and “I’ve had experiences with people who come and that didn’t work” or ”this did work” or “this is what we do” or some input. I’ll be able to put together a better session if I have some imput and feedback.. Cindy and I want to know. We do have time. I have a half hour for questions some input and feedback Does anyone have questions?


Cindy: Say your name and institution you represent

“Hi I’m Claudia Ocello from Museum Partners Consulting, a firm that works with accessibility, as well as education, evaluations, and exhibitions. Mine is a little personal. I have a nephew with who has Asperger’s Syndrome and he is going through puberty right now, he is 15, he is great, wonderful young man and he has been struggling with those things. I know that there are things his parents can take care of for him, but as another person who cares about him, what resources are out there in the community, are there support groups for adolescents? I haven’t seen much for adolescents, I’ve seen them for little kids. Are there books I can point him to, to read?”
Irene: Where are you?
Claudia: In New Jersey.”
Irene: I’m not really good at resources in New Jersey. There is Eden, Alpine Learning Group.
Claudia: I just mean that I have just seen so much written for and about young kids and adults. I just haven’t seen a lot for adolescence. And I’m struggling with that.
Irene: You know what I can give you my card. I can give everybody an email: Irene.m.cavanaugh@gmail.com.
Cindy: And Irene will send out an email to everyone who is here today.
Irene: …I will be happy to do the research for you. I will happy to get you the answers. We have OPWDD  (Office for Persons with Developmental Disabilities) in New York and New Jersey it’s the DDD. They should have some resources.  The other schools such as Eden, Alpine, Autism New Jersey, we can find these out for you.
Claudia: I just wasn’t sure if there had been studies done or things published on adolescents in particular. That is what I’m looking for. I’m looking for resources for the adults in his life to help him through this. Studies…that kind of stuff.
Irene: Okay, write it, email me or email Cindy, write it on the blog. If we don’t know it, we’ll find it out for you.
Cindy: This woman has a response.
Woman: I would contact the Aspen Group in New Jersey. Asperger’s Syndrome. They’re really terrific they have a lot of resource, do a lot of stuff with young adults with Asperger’s. And they’re great.
Irene: And your name and institution?
Woman: I am Shirlee Taylor from The FAR Fund.
Claudia: Thank you.
Much clapping.
Irene: See?
Woman: I’m Marsha Eli (?) from the Transit Museum. So, what is it about trains?
Irene: I don’t know, but we love them. We love that place. They ask for it.
Marsha: Why?
Irene: It’s that preoccupation with intensity and focus on wheels and moving parts on things.
Marsha: The system of the subway
Irene: Do they really see the system of it when they’re there? And maps probably.
Marsha: Where trains stop and where they go.
Irene: Yeah, But my guys aren’t up to that level. But the trains the looking at them, the whistles, the sensory stuff . . .from my experience with my kids it’s the sensory stuff.

Woman: Hi I’m Sara from the Museum on Eldridge Street. I’m just wondering if any of the symptoms or behaviors present differently in girls than in boys and if the treatment is different for girls than boys?

Irene: We don’t treat girls different than boys. We treat the individual. Who presents themselves and the  behavior are the goals we are working on. I haven’t read any literature that says it presents differently. But I’ll say that puberty for girls hits harder. Understand that I probably have limited experience with girls because we have less girls. Do you want to come in on this?

Gill: I don’t think there is any research on this.
Irene: I don’t think there is any research either.
Gill: I think we have more girls than you do. I’m Gil Tippy from the Rebecca School on 30th Street. We have a lot more girls than you do, I don’t exactly know why we are about 1/3 girls. There isn’t any evidence and nobody has ever shown any differences.
Irene: Yeah, I do from personal experience of girls I worked with from here and working overseas, the boys it kind of takes you by surprise. But with the girls, it is like of oooh then it happens. Because there is that ability to communicate pain, hurt, feelings you know that kind of stuff that’s hard every month. Oh, that’s what I was talking about.

Woman: Gil I’m glad you’re here and it’s nice to meet you. I’m from the Guggenheim and we just finished a year-long pilot with the Brooklyn Autism Center which is an ABA school, and one of the greatest challenges for us as museum educators is how to negotiate the ABA methodology with children used to that method as to what we use in museums which is much more open-ended, and student-centered, and group centered?  That is one question that I have. We have been exploring that for the whole year. We don’t have definite answers, but we have some ideas as what not to do. And the other questions, it seems to me as I’m learning more about the autism community, is that children that are more on the severe end of the spectrum seem to and their parents seem to work better with ABA where as children that are more in the middle or on the lower end of the spectrum seem to work better with a mélange of approaches and not just ABA. Is that…?

Irene: Yeah, I can’t spout the literature right off, and I have always worked with severely challenging population, so we get good results. I don’t see, when I think of ABA, I think of it in my life, I think of it all the time, and we are always thinking about, it is about measuring. It is about a data based approach about when to take the next step or not. Proponents of ABA might say it works with everybody. Is it used more because there is more of a need? They seek it out, because they are in ABA schools as opposed to having ABA at home.

Ken: Just to follow up the first question really peaked my interest. This idea of museum educators, professionals intersecting with a group of kids who may be coming from ABA schools, where they are used to a certain kind of environment, a certain kind of approach; how are museum folks who work with people in very different ways, the points of intersection; that may be fruitful to explore next time around.

Irene: Yeah, I can give a little bit of that away. You don’t need, you can structure the environment. You have to structure the environment. So you structure the environment. We use schedules. We would be trained in picture schedules or written schedules. So when I was saying people with autism like sameness and they like adherence to schedules and routines, how we help with flexibility in that, they will have the schedule of the day, but you’re not following the schedule everyday the same way. I mean lunch might come at this time…so there is flexibility built into the structure.  Note transitions are difficult. So how do we account for transitions? Transitions are less difficult if you know what comes next. What are the reinforcers that you are using? Setting up a system when they’re there to be able to account for all these things. So you work with the teachers and the teachers would set that up and the teachers would come with it already put into you know. Some kids need to work on their own without distractions.

Woman from Guggenheim: One of the things that we noticed, when you work with a group of children with a ratio of 1 to 1; one adult to one child, everything is differentiated. You may have a general idea of that you want the children to explore or experience, but it is going manifest itself very differently with every child at a different pace.

Irene: It is the thing to…

Woman from Guggenheim: Which is different what museums educators typically aim for, we typically aim for a communal experience, whether it is inquiry or conversation or an activity, we had to adjust our goals.

Irene: And that may be okay with some people with autism…but I lost my train of thought. Here’s the other thing…We present something as educators, like I wanted you to understand the way I wanted you to understand. And I want you to take out of this, all of this. But a person with autism might be understanding it differently or might be taking out of it one little piece of it.  And might be enjoying it and it’s a fulfilling experience for them looking at the wheels on the train and not looking at how the whole thing works and not the conductors.