Intense emotional experiences are difficult for people with autism/Asperger’s. This is very true when the emotional experience involves other people and is not related directly to the needs or desires of the person with autism/Asperger’s. In this episode, Max is unable to relate to the feelings Sarah is experiencing when Amber is in the hospital. Indeed, the disability in being able to connect with other people and to develop an understanding of how someone else might be feeling is difficult and at times even completely alienating. A patient of mine (and an avid “Star Trek” fan) once told me that “having autism/Asperger’s is like being a Vulcan living among Klingons.”
For those of us who are “neurotypical,” we generally get a feeling of connectedness, satisfaction, and comfort when sharing in intensely emotional situations – especially those involving grief and/or death. For people with autism/Asperger’s, they just don’t get those same positive feelings that reinforce the interaction. In fact, a person with autism/Asperger’s will usually find encounters with others who are sharing feelings and comforting one another to be confusing and even frightening. The whole process simply makes little sense to them, and there is certainly nothing that is pleasant or reinforcing about the situation. Trying to get a person with autism/Asperger’s to understand and empathize is to reach the very core of their disability: social and emotional connectedness is the very thing that they are unable to do, or at least not able to do very well. Teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig (at least most of the time).
That being said, there are ways that people with autism/Asperger’s can learn to at least approximate feelings of empathy and compassion. With social stories and direct interventions in specific social situations, as Adam attempts to do with Max in this episode, people with autism/Asperger’s can at least “learn the rules” for how someone “should” act in an intensely emotional situation. When this goes well – when they get the rules correctly – they can feel a great deal of satisfaction with themselves for “getting it right.” As much as they don’t understand why people feel a certain feeling, they do often care if people respond to them in an odd or hostile way. When the important others get frustrated, disappointed or even angry with the person with autism/Asperger’s because they are not empathetic or “understanding” someone else’s point of view, it changes how that important other would generally interact with the person with autism/Asperger’s – and that’s confusing and scary.
When Frankie was very young, we began to intervene and attempt to teach the appropriate response to him when he was in a situation where he should clearly be expressing some empathy but “just didn’t get it.” This meant that we had to be vigilant about monitoring his interactions with others. It also meant we had to be ready to step in whenever there was a situation that provided a teaching moment. For many years, Frankie would not follow through independently on any of our “examples.” Eventually, he began to respond to situations in which he should show some empathy but in a very scripted way. Nonetheless, we would reinforce with praise and attention. As time has passed, Frankie has continued to respond in an almost appropriate way to situations where he should show empathy but he is clearly not directly impacted.
Like everything else with autism/Asperger’s, the key has been the intensity and persistence of the teaching. At this point, Frankie may even feel some semblance of empathy, but I know that he will never receive as much from these interactions as I do. I am grateful that at least at this point he, like Max, can feel good about himself and experience others feeling good about him as he struggles to connect socially in a world that often makes little sense to him.
Written by Roy Q. Sanders, M.D.
Visit our Topic of the Week, ‘How do you manage meltdowns?‘ to hear from the community.
NBC’s Parenthood is one of our favorite shows on television! We have had weekly discussions on our blog about different topics that the show touches on, primarily in coping with Max’s Asperger’s Syndrome. So much has happened this season and the finale is upon us – we want to celebrate!
Autism Speaks is going to give-a-way a Parenthood script signed by the entire cast and you can be in the running to win!
All you have to do is tell us on Twitter, ‘How has the television show ‘Parenthood’ affected you?’
Your Twitter Handle will then be entered in a random drawing to win the signed script!
Be sure to tune in to NBC tonight at 10pm EST to watch the the finale of Parenthood!
Fearing the worst, Adam and Kristina meet with Dr. Robertson, the principal of Footpath, Max’s school. But the news is good, great even. Max is doing so well, they’re having to look for new ways to challenge him in the classroom moving forward. In fact, Adam and Kristina might want to consider transferring Max to a school where he can reach his full potential both academically and socially – i.e. mainstreaming.
Have you mainstreamed your child? What has your experience been? Did your child grow academically and socially?
This week on Parenthood, ‘Qualities and Difficulties,’ Adam and Kristina sit down with Max. Now that the cat’s out of the bag, Max wants to know about autism – what is it? Adam starts off talking about disabilities, and Kristina corrects him, but their explanation isn’t anything Max can really understand, and his lack of response triggers his parents’ emotions. Asperger’s is tough to deal with but they will, and no matter what happens they’ll always love him. And no, no one else in the family has it, only Max. When Kristina starts crying, Max asks to go to his room and runs off. Adam tries to give Kristina some support, but she tells him to stop and dissolves in a puddle of sobs.
In this clip Adam and Kristina make an appointment with Dr. Pelikan to discuss telling Max about Asperger’s.
How do you react to this clip? Do you agree with Dr. Pelikan’s advice?
To watch full episodes of Parenthood visit here.
We wanted to host a follow-up discussion to our previous Parenthood post, ‘The Void a Therapist Can Leave.’ So much happened in the episode, ‘Do Not Sleep with Your Autistic Nephew’s Therapist,’ we figured we couldn’t settle for just one post!
In this clip, Adam and Crosby are arguing. Pushed beyond his limits, Adam reminds Crosby that Gaby is a behavioral aid because he as Asperger’s. Max appears on the stairs, drawn by all the yellling. He has Asperger’s? What’s Asperger’s?
Have you told your child they have an autism spectrum disorder? If you are on the spectrum, how did you come to find out? What was this experience like? Please share with us your story.
This week on Parenthood, ‘Do Not Sleep with Your Autistic Nephew’s Therapist,’ Adam and Kristina are dealt a huge blow when Gaby, Max’s behavioral therapist, gives notice that she can no longer work with them. Adam and Kristina are unaware at the time why she is leaving, but she is visibly upset.
Adam and Kristina are stirring and unsure what do. They are trying to pick up where Gaby left off, but Max is full-blown meltdown mode and it seems there is little hope in site.
Have you experienced the departure of a therapist that affected your family? How did you handle it?
Please stay tuned this week for even more Parenthood discussion. Watch the full episode here, so you will be ready to participate!
Episode 216: Amazing Andy and His Wonderful World of Bugs gave us a lot to think about this week. We can discuss the pressure and stress of planning a birthday party or even Max’s meltdown when Gaby changes her sticker rule.
But what really struck us, was Zeek’s transformation in the way he saw Andy, the party planner. He was put off at first by Andy’s behavior. Why was he refusing help and not allowing people to touch his things? Once Adam explains that Andy does in fact has Asperger’s he is impressed. It was eye opening for him to see that he was living an independent life.
For those families who are preparing for the journey from adolescence into adulthood, please check out our Transition Tool Kit. It is an extremely useful resource.
We love the ‘Experts Speaks‘ portion of the ‘Parenthood‘ website, and we think it is important to share with you, especially this week. Here Roy Q. Sanders, M.D., shares his experience in learning to ‘let go’ of his adolescent son.
Our son Frankie will be 15 in May. Not a day goes by without my thinking about his future. The discussion over the past month has been whether he will go to our public high school or not next fall. He is absolutely sure that the time is right for him to “move on.” Yesterday, while we were cleaning the chicken coop (birds are his thing), he told me, in his own peculiar sounding voice, “I know I have autism. I know I am different. I am okay with that.” When I expressed my concerns about his not having the support that he has now at his current school (a specialized program for teenagers with autism) he told me, “You are worrying too much. You need to let it go.”
I had to smile. How many times have I told Frankie “You need to let it go”?
I suppose it’s difficult for any parent to imagine a child all grown up and taking care of him or herself. For those of us with children on the spectrum – and even though we worry about it every day – actually imagining a kid like Frankie all grown up and taking care of himself and being “okay with his autism” is an almost impossible leap of imagination. But we do know that our children will grow up, and we know each of them will live their lives as independently as they are capable with the tools we have given them.
Here’s another thing Frankie told me: “Don’t worry, you have taught me how to do this. You have taught me everything.” Like Adam in this episode, I tend to get so wrapped up in the day-to-day struggles with Frankie that I forget how much he is learning and how much his (and our) hard work are paying off. I often don’t see that we are making real progress in helping him grow into an independent adult with his own life, his own interests, and his own difficulties and quirks – just like Andy the Bug Man.
What I have seen with Frankie’s typical friendships is the same sort of understanding and support that Zeek gives Andy. Frankie’s friends are all ready to jump in and help. They “have his back.” Because they understand Frankie has autism and that he’s “different,” they do what any good friends would do: they help him out, and do what they can to structure the environment to give him room to be himself in all of his wonderful differentness.
For years I have counseled parents, teachers, patients and all sorts of social groups on how to look beyond any disabilities and see the abilities. I have advocated for inclusion. I have challenged us all to work to move beyond acceptance and toward embracing our children’s differences. I have believed (along with Jennie Weiss Block, author of “Copious Hosting: A Theology of Access for People with Disabilities”) that welcoming and embracing people with disabilities brings a theology of liberation – not only to the disabled but to those of us who are “abled” as well. We are all blessed. Now I find myself on the horns of a dilemma. Do I opt for safety, security, nurturing and growth in a very secure environment for the next few years before “allowing” Frankie the path to more complete inclusion… or do I walk with him now into the messiness of life in the “real world” and all the growth, pain and joy that this choice entails? Do I “allow” him to liberate himself while bringing liberation to those around him? Do I restrict his willingness to give himself or the willingness of others to give to him?
In reality, the choice may not be quite so stark, but it sure feels that way. This episode has been a great reminder of not only how our children’s passions can give them a life of working and loving, but also of how painful it can be for parents to “let go” and “allow” their children to risk the pain, but also experience the joy of living their own life.
Written by Roy Q. Sanders, M.D.
Asperger’s syndrome and keeping secrets – isn’t this an oxymoron? In this episode, Max quite naturally (and without malice) reveals a secret that his sister, Haddie, would rather he didn’t. She’s still seeing Alex against her parents’ wishes and has been hiding it, but as Haddie is reminded in this episode, if there’s an individual with Asperger’s syndrome in the family, secrets are non-existent.
This can cause great difficulty, uncomfortable situations and family disputes. When Max lets her secret slip, Haddie is put into a painful situation as Adam and Kristina become surprised and upset with her. Adam and Kristina had already grounded her in a previous episode for keeping secrets, and now Max has let her cat out of the bag. This doesn’t endear Max to Haddie, a problem that siblings of Asperger’s kids struggle with on a daily basis.
Having the ability to hold secrets for any length of time requires trust between individuals and an understanding of others’ needs. This is very difficult for someone on the spectrum. A core feature of autism spectrum disorder is impairment in understanding the social needs of other people, since ASD entails a lack of underlying social understanding and perspective taking.
In order to keep a secret, one needs to know who can be told the information in question and who cannot. This type of problem solving requires abstract reasoning and sorting through a myriad of information bytes at lightning speed, and finally coming to a reasonable solution that works out for all. Those with autism spectrum are concrete thinkers and exceptionally honest – if asked a question, they will respond with the truth, without taking the time to analyze and reflect what should be said and not said. Thus, secrets are hard for them to keep for any length of time.
ASD or not, some secrets should be kept – such as answers to test questions and personal family information. But other secrets are best told, such as those involving criminal activity or anything entailing the exploitation or manipulation of the person with ASD. But how is a person with autism spectrum to know the difference? Some secrets are tiny and have no real consequences; some are major and can endanger life. As siblings grow up, they tell each other many secrets (parents, this should not be a surprise) and as a result, they learn by doing: when to keep secrets, when to reveal them, and what should never be told. But when you add a child with autism spectrum disorder to the mix, typically developing siblings may end up feeling that they can’t trust their own flesh and blood, and the sibling with the disorder is placed in social situations he can’t figured out and that continually get him or her in trouble.
When faced with the type of situation Max finds himself in in this episode, those with ASD will usually tell it like it is – revealing to parents, siblings, their friends, acquaintances and perfect strangers things that shouldn’t be told. This can be either a positive or a negative; how others handle the completely honest statements made by the child with ASD will determine how much trouble will follow. If a very young child, most adults will laugh over the blunder; if an older adolescent or adult, grave consequences can result.
For the child with autism spectrum, this whole business of keeping secrets can be very confusing. Appropriate instruction on secret keeping is both difficult and delicate and should be tackled carefully by parents and teachers. Even after intensive instruction however, making this type of judgment requires split-second analysis of multiple factors, both concrete and humanistic. So don’t be surprised when the kid spills the beans.
Written by Sheila Wagner, M.Ed.
On this week’s episode, “A House Divided,” of Parenthood, Zeek takes Max on a camping trip; it’s a Braverman family tradition.While Adam and Kristina are nervous that Max being outside of his normal environment will lead to an unsuccessful trip. They provide a manual for Zeek, but he is extremely offended; he can camp with his own grandson.
Out in the wild, Zeek and Max arrive at the campsite. Zeek asks for Max’s help setting up the tent, but can’t get his attention or help. Zeek tells Max stories about his camping trips with the other Braverman men. When Max asks if they have done everything they were suppose to do, why can’t they go home? When Max doesn’t like Zeek’s answer, he has a full meltdown and Zeek doesn’t know what to do.
While at Julia’s, Zeek calls Adam for help with Max. Adam asks to talk to Max immediately. Zeek confesses to not reading the instruction manual that Kristina provided. Adam lays it on Max and gives him a choice. He can come home, but if he does he’ll miss out on something really special. Ultimately the decision is Max’s to make. When Max tells Zeek they can stay, Zeek is amazed. Adam and Kristina wait at Zeek and Camille’s for their arrival the following morning to welcome them home with open arms. Zeek has a touching moment with Adam tells him what a wonderful boy Max is.
How do you cope when your family doesn’t understand you or your child’s struggles?
Have you ever had a situation where your child’s blatant honesty has come through? If so, how did you handle it?
Laura Shumaker wrote a post sharing her own version, Don’t Tell Mom the Babysitter’s Fat.