Reconsidering the Autism Spectrum | Ronit Molko | TEDxSedona

[Music] earlier this year I was watching a news story about a young autistic man named Connor and an encounter with a police officer that happened here in Arizona the police officer was a trained drug recognition expert and he suspected the Connor who was hanging out in a park was doing drugs because he saw Connor soiling something in his fingers and they bringing it up to his face as if to smell it the officer confronted him and said to Connor what are you doing and Connor said I'm stimming the officer was clearly confused to not know what that was and say to Connor what's that in your hand it's a piece of string Connor said Connor started to walk away with that the officer grabbed Connors hands restrained them behind his back and pushed him to the ground Connor started to panic and it's absolutely heart-wrenching to listen to him on video he starts telling himself I'm okay I'm okay and breathe as if trying to calm himself down in the meantime the officers are straining him on the ground and yelling at him to be still and to be calm Connor continues to scream I need help why are you doing this am I going to go away with that Connors caregiver comes running up to the police officer and explains to him that Connor has autism and that stimming is a sensory behavior that calms the nervous system as a result of this incident kind of sustained a number of physical injuries but perhaps even worse was the emotional trauma he suffered getting into trouble with the policeman unnecessarily when he's been taught to access police for safety Connor is pretty significantly impacted by his autism he has limited speech and he has trouble communicating and relating especially in unfamiliar situations unfortunately what happened to Connor is all too common in today's society because the behavior and the presentation of autistic individuals is not well understood they often get into trouble unnecessarily and even though these greater awareness in our society about autism the general public is not very well informed not only what autism is or what it looks like and the wide variety of expressions that can take across the population this is Russell I met Russell about a year ago I was sitting by myself in a hotel room gathering my thoughts for a televised interview that was about to happen all of a sudden in the hallway there was a huge commotion I got up to go see what was going on and as I opened the door laying at my feet was this grown man curled up in the fetal position crying trembling and shaking I realized that I was looking at Russell as we tried to calm him down I learned more about who Russell is Russell is an internationally acclaimed motivational speaker he's an author and a poet he also can become completely overwhelmed by his environment and situations in which he finds himself we would commonly refer to Russell as high-functioning that's a term that's used categorize a specific set of some terms or presentation of autism because Russell is a great communicator he can take care of his own needs and he does not have an intellectual disability how his autism impacts him is difficult to grasp because largely his autism is invisible high functioning individuals they do have a lot of needs they're just difficult to detect they can become overwhelmed by their environments they have a lot of sensory sensitivity and unfortunately they get into trouble a lot and they don't have their needs met because the assumption is because it's not obvious the needs don't exist so we now have this growing population of young adults with varying levels of functioning like Connor and Russell living in our communities whose needs are misunderstood and ignored a lot of these individuals struggle in areas that are very difficult to detect so for example somebody like Russell or a high-functioning individual will struggle to connect with people because they don't understand how to initiate those interactions it has to be taught they struggle to integrate into their communities because it's difficult to find matching interests and areas of interest and just deal with with groups and all the social norms that we expect they have challengers developing meaningful long-term French because the rules of social engagement are so foreign to them and they have trouble accessing the support that they need I've been working in the autism industry for three decades first as a therapist working directly with kids and then as the co-founder of a large service company that provided services to kids with autism I was incredibly proud of the work we did and the impact we had on thousands of lives but we had focused on children after selling my company I started meeting and interacting with more and more adults on the spectrum and I started to ask a lot of questions what stunned me was the rabbit-hole I went down as I started to learn just how much adults was struggling to live their lives what became clear to me was that despite the efforts of a well-intentioned clinical community the intensive work that we were doing with kids was not necessarily translating into meaningful and fulfilled adult lives and for high-functioning individuals it's even worse because their needs are often not obvious they're kind of left out on the cold to navigate this transition into adulthood themselves something that the parents have to navigate with them often for the rest of their parents life so this is the result of a system that is focused on children and not a system that really thinks about what are we giving kids so that they can transition into adulthood in a meaningful way we can't assume as practitioners and as service providers that the work were doing with kids becomes a meaningful in adulthood and that the tools were outfitting with them were actually become meaningful and adulthood so it's really crucial to understand that if you work with an autistic child you're working with the adult that they will become the prevalence of autism has increased dramatically in the last two decades and it continues to grow as our understanding of the disorder evolves and as the defining characteristics and requirements for diagnosis are modified and revised 30 years ago one in two-and-a-half thousand kids were diagnosed with autism today that number sets are close to one in 45 meaning that two and a half percent of our popular is on the autism spectrum and with this growth we now have 50,000 autistic teens maturing into adulthood every year and this number continues to grow many of these are ill-equipped to live independently to find and maintain jobs and to develop meaningful long-term personal relationships and what's even more alarming is the recent research that shows that suicide rates in this population are up with adults or testigo dolls being 9 times more likely than the general population to contemplate or have attempted suicide and kids being 28 times more likely to have suicidal thoughts than the general population when I started working in the industry three decades ago the driving question that drove our research and our intervention was what makes autistic is normal the goal of services was to provide enough skills and tools to kids so that if you looked at a bunch of kids on the playground they were indistinguishable from their peers many companies today still promote this promise of recovery and sell this idea to parents but autism is a developmental disorder it's lifelong and even though significant gains can be made through intervention it does not go away and as many autistic adults have said to me in the last year's that I've been interviewing them what gives me the right as a professional to decide who want to cure somebody from the origin something that is core to their identity and how they've known themselves from the time they were born so we really need to be rethinking how we're approaching this population and the work that we do with them instead of asking what makes kids normal we should be asking what will help this person live a fulfilled life because who gets to decide what makes a meaningful life is it me the professional is that the service provider it's the individual themselves they should be able to decide where they want to live who they want to spend their time with and what they want to do every day there's a great example of this concept of termina our idea of normal upside down this beautiful documentary life animated tells the story the real story of a family on their journey with autism in this documentary we see tierod little Owen who loves Disney playing make-believe of his dad Owen his Peter Pan his daddy's Captain Hook and their sword fighting and wrestling and tackling each other in the crunchy leaves on the ground in the autumn all of a sudden they describe Owen at the age of three starting to disappear into himself he loses his ability to speak he stops making eye contact and he does not respond to his name when he's called his parents describe watching home movies as if you're looking to the clues for a kidnapping where did Owen go ultimately his parents received the diagnosis of autism and being that this is the early 90s there only reference for this is the movie Rain Man which came out in the late 80s which was the portrayal of a man so severely impacted by his autism that he could not live in society so his parents are devastated because the doctors leave them with little hope for Owens future after four years of barely speaking own runs into the kitchen one day and says about his big brother Walt does not want to grow up like Mowgli and Peter Pan Owens parents are dumbfounded in the last four years Owen has said a word here or there but he's never come out with the 10:11 word sentence and a sentence within sight about his brother Owens dad grabs the puppet Yaga from the movie Aladdin and he runs into Owens room covers his head with the bedspread and he says to Owen in Yaga's voice Owen what's it like to be you and Owen says not so good and him and his dad proceeded to have the first conversation they've ever had in seven years of Owens life what Owens parents realize is that he's upset his knee and his repeated watching of these movies is his link to the outside world Owen is taking stories and movies and plots and understanding his world through the eyes of Disney so his parents start conversing with Owen in Disney dialogue now kids with autism adults with autism have restricted interests it's one of the characteristic of autism as professionals we try to eliminate each restricted interest because we deemed them to be inappropriate what's so beautiful in this example of Owen and his family is that they took his restricted interest and his love for Disney and created a link to the outside world and they used Disney and Disney stories to teach Owen about life today Owens an adult he's graduated high school he lives in his own apartment he works part-time and he's even spoken publicly about his experiences in addition he runs an adult support group where adults with autism get together and they talk about life through Disney so when we look at an example like this and we shift our minds away from this idea of pushing people towards normalization and instead we assess who they are what their uniqueness is and how it impacts their life we can think about autism differently and so much more becomes possible to do that let's take a look at the autism spectrum in the way it's currently viewed this is how the autism spectrum is currently thought of it's a linear spectrum from high-functioning to low functioning the lower functioning you are the more impacted your life is by your autism the more to the right of the spectrum you would fit typically individuals on the very low end have intellectual disabilities and have multiple domains of functioning that are impacted for individuals on the high end of the spectrum because they're good communicators and they don't have an intellectual disability their needs are dismissed and ignored but if you talk to individuals on this end of the spectrum they do have a lot of needs they become overwhelmed easily they become confused easily and things that for you and I are typical are very exhausting for example if we're making eye contact we're not really thinking about it you're looking at somebody's eyes you're looking at somebody's face and you're having a conversation for autistic individuals eye contact can be physically painful and very uncomfortable and once we're in a conversation I'm not really thinking and you're not really thinking about how I'm interpreting your facial cues and your body language it's something that we do subconsciously but for individuals on the spectrum facial cues don't make any sense so they're looking at your face and trying to understand how does your expression match the words that are coming out of your mouth at the same time they have to filter out all the external noise so they can hear what you're saying and they have to plan a response that is going to be deemed socially appropriate so it's exhausting and it's overwhelming and that's why many high-functioning individuals spend a lot of time alone and they avoid things like going to college or taking a job even though they have wonderful contributions to make so here's a different way of looking at the spectrum this is a three-dimensional construct and instead of looking at the spectrum along a linear line we can look at each domain of functioning and ways somebody has capacity on that domain and how they functioning fluctuates throughout different situations so let's look at Russell for example Russell is a great communicator he has good language he has great motor skills he's very perceptive and he has good executive functioning skills he can make good decisions about his life he's also very sensitive from a sensory perspective so when he becomes overwhelmed by his environment as he was that day having to drive through Los Angeles traffic to get to hotel that was unfamiliar to be nervous for a televised interview he became so overwhelmed by his sensory environment that his anxiety became debilitating and took him down and so to put him on the high-functioning end of the scale and say he doesn't have needs because he's high functioning is just wrong it's just inaccurate this perspective allows us to look at how traits that our strengths can also become weaknesses in different situations so what becomes possible when we take a different viewpoint and we look at people with the unique strengths and challenges that evolve over time as they grow well we can change the way we approach someone when we meet them or when we think they need help for example the mom in the grocery store whose child's having a meltdown or the teenager in the park is acting strangely we can educate our emergency response teams about what autism is and what it looks like and most importantly how to approach someone there's a very large and growing service provider market in response to the demand for services it really is time for service providers to change the driving question of intervention away from normalization to how do we really prepare individuals for adulthood because we have this growing population of adults that are completely ill-equipped to live in society this industry has become incredibly attractive to investors the growth in autism the recent increase in the availability of funding for services and the relative youth of the industry is very attractive to investors it's really important for investors to understand the shifting demands of the market with one in 45 individuals being impacted by autism everybody in this room each of you either knows works with or will be related to somebody with autism in your lifetime and while diagnoses and labels are critical so people can access funding and get the intervention they need the danger of labels is that we lose our humanity when we stop seeing people as three-dimensional individuals and we only see them by their label like a DD or OCD or autism we conjure up a lot of negative perceptions and we D personalize them and the problem with D personalizing people is that we judge them we deny them what they need and we violate their rights so I want to remind everybody here to be kind and curious to treat everyone you meet with compassion because you never know the individual struggles people are dealing with it is the differences in how we think process information and perceive our world that makes humanity beautiful thank you you

Channel: TEDx Talks

Views: 82,787

Keywords: TEDxTalks, English, Education, Medical research, Medicine

Id: 2v33Hm3WswY

Length: 17min 35sec (1055 seconds)

Published: Fri Jun 07 2019