Ajay Rochester is a best selling author of 5 books on health and wellness and was host of The Biggest Loser Australia for 4 years. She now lives in Beverly Hills California with her son Kai, has a TV show in development and is currently working on her latest book “247 toothpicks – Living, Loving and Laughing with Aspergers!” You can follow her journey at www.chasingoprah.com
Putting the finishing touches on my son’s birthday cake I realise I have made a huge mistake. No, not misspelling his name, not miscounting the number of candles but making the wrong number of penguins to sit atop theAntarcticasnow scene I have spent the last week making. It has to be seven penguins or it just won’t be the work of love I want it to be.
There won’t be a foot stamping “I want a pony daddy” scene like Veruca Salt in Willy Wonka’s Chocolate Factory but it can mean the difference between a peaceful week leading up to the birthday picnic we have arranged or constant obsessing and begging to make the penguins total seven, more than likely winding up with him making his own out of paper and plasticine, placing it on top, unintentionally bringing the whole cake down – a little like our life in general – beautiful one day, stormy the next!
But, if “fixed”, could go so far as avoiding or at least minimising the inevitable anxiousness and almost guaranteed teary meltdown we always experience moments before any social occasion out of the normal weekly routine not excluding birthdays. It’s like my son has permanent stage fright except that in the words of the late great Shakespeare, “…all the world’s a stage…”
And before the high and mighty perfect parents with perfect children (aka the deluded ones among us) tut tut and say it is all about having discipline and being well behaved I must explain that my son has Asperger’s Syndrome – a high functioning form of autism .
Every kid is different, every day is different, every age changes the way in which it manifests, diet and nutrition can make all the difference one day and do nothing another. There is no “cure”, no antidote, not enough experts, differing opinions, too many sceptics, too much politics, not enough support, way too much ignorance and far too much discrimination from those who don’t get it. And yet if I was given the opportunity to “send him back” and make him “better” I wouldn’t. He is my blessing, my joy, my challenge, more meaningful than any troubles I might ever have, much more important than anything that rises up in my own ego, more precious than any metal I own and exactly as he is meant to be – perfect in his imperfections.
He’s not retarded or slow or dumb, despite having been called all that and more from kids and stupid parents alike (lucky they haven’t seen me reply with my fists!! GRR). He just sees the world differently a little like having blinkers that enable him to only see the world his way.
He loves penguins (thus the penguin cake) because they flap their wings like he flaps his hands uncontrollably when he gets stressed – the official term is stimming but we call it “Pengy hands” in an attempt to embrace all that he is with a healthy dose of humor. If you can’t beat it then have a bloody good laugh about it as often as you can cause when the tough times come there can be some very dark days. We like to BE the light at the end of the tunnel rather than wait for it.
At various times he has sucked his fingers, sucked his hair, sucked his clothes, sucked pens, hated washing his hands, washed his hands obsessively, been water phobic, food phobic and is currently germ-a-phobic. He can’t stand loud noise or bright light, could not touch paper for about a year (that was a tough year at school) and for a year and a half could not touch clothing for two hours after bathing and as such I had to lie him on the floor like a baby needing a new diaper as I slid pants onto my eight year old son, crying inside for the pain, desperation and humiliation I saw on his face. But with a tickle of the tummy and a joke about him always being my baby we turned it into an intimate moment, a few seconds to tell him I love him taking the focus away from what was really going on.
These phases come and go but the list goes on. We had the lumpy sock syndrome for a few years, with Kai frozen in his inability to get his shoes on his feet and get out the door to school crawling under the bed, smashing his head with his foot calling himself stupid and retarded and wishing he could die because in the midst of his disorder he knows it is not “normal” to feel these things.
Knowing him as well as I do, I know (but can’t ever really KNOW!!) the tsunami of fear rising up inside of him every time we do something out of the ordinary including having a birthday party – something every kid talks about year round! Not knowing what the next part of his day will smell or sound like, not knowing how the people will be, what it will look like, what will happen, whether or not he knows their names, how long it will go for, what he is expected to do and what might happen if something goes wrong if he can get there at all…it’s like putting a French speaking professor of science in a room full of Japanese history students and expecting him to teach the class and have the students tested at the end. Most kids would be peeing their pants with excitement whereas my boy wets the bed with fear, still at the age of eleven.
And so, with that old adage of “you have to pick your battles” as a parent of a kid with Aspergers you take that to a whole new level. You give them as much security as you can, as much familiarity as is humanly possible, including making seven penguins on his birthday cake because inside he will be happy all day knowing that that one thing is perfect perfect perfect perfect perfect perfect perfect and therefore gives him the solid foundation he needs to deal with all the other unknown frightening overwhelming factors of that day.
That way when we blow the candles out on the cake we can say, “Happy Birthday!” and mean it!
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
This is a response we received from a young man with Asperger’s Syndrome who received an Autism Cares grant.
The Autism Cares Grant help me to establish some independence and get back on my feet. I’ve been struggling as I try and navigate life on the autism spectrum. For a while I was letting my struggles affect me in other areas of my life. I was taking all of the negative things in my life out on other people. The Autism Cares grant not only helped me pay my rent and give me a nice place to live for 4 months it is going to help me get other areas of my life up and going the way that they should be. I’m very excited and appreciative of the Autism Cares grant and know that it will be put to good use. This will allow me time to get on my feet and try and find a good job for me. I have Asperger’s Syndrome and I really want to become as independent as I can and it’s something I am working on doing. My parents were losing their house so I was going to be left without a place to stay. The Autism Cares grant helped me help my parents save their house so not only myself but my entire family could keep a roof over their head as well. I’m now able to pay my parents rent I owe them for 4 months thanks to the Autism Cares grant. Thank you to everyone at Autism Speaks.
To learn more about our Autism Cares program, visit www.autismcares.org. For more information on transition and independence for young adults and adults with autism, check out our transition tool kit!http://www.autismspeaks.org/community/family_services/transition.php
Serena Hua, undergraduate at UCSD studying Neuroscience and Psychology, founder and president of Awareness and Action for Autism
My purpose in attending the IMFAR Community Conference was anything but to solely learn about the latest research on autism. That is not to say, however, that I was not guilty of clinging to the edge of my seat desperately absorbing all the mind blowing information that was being presented to me and the sea of at least 200 or so parents, doctors, researchers and teachers. Captivated I was, despite being an undergraduate here at UCSD where these kinds of exciting research surround you each and every day, I didn’t see the conference as the sole opportunity for me to dive into all that was going on in the science hemisphere of the ASD world. I was here for other reasons.
The crowd of attendees, consisting of mostly parents and professionals that work with individuals on the spectrum were, on the other hand, all here for the research and the new knowledge. I couldn’t help but notice how enthralled they were to be there, to meet other parents and, most importantly, to learn about how dedicated individuals like themselves were playing their own part in this battle against autism. They sat hour after hour, listened to talk after talk, bombarded the speakers with questions one after the other – a feat us college kids won’t even dream of accomplishing. They made every minute of this conference worth their time, ensuring that their questions were answered or at least acknowledged with a ‘good question!’ kind of response. Sitting there next to a grandparent of an ASD kid and cracking up over the diverse panel of absolutely brilliant young adults with Asperger’s, or “Aspies” as they call themselves, I found myself savoring every second of the conference.
What I remember most from the day was when Stephen Shore and John Elder Robison spoke during one of the breakout sessions about their experiences as individuals with ASD. As they were sharing their quirks and insights on the disorder, I turned to look at everyone around me, and smiled to myself. I couldn’t pinpoint why, but at that moment, I was so happy to be where I was. To me, these were people who stood for the hope that someday my own six-year-old cousin could have his own family, lead his own life, and stand for what he believed in. I felt like I wanted to shout that to the world, and I wondered if those around me were feeling the same way.
Last year, I started the Awareness and Action for Autism organization, which aims to find opportunities for college students to help out in the ASD community. My organization stemmed from the feeling of helplessness when it came to helping my autistic cousin; away from home, I could not do anything significant to support him and his family at a time when they needed support the most – and that killed me. This was my effort to do my part. Starting this club was my effort to inform those who didn’t know a thing about autism – raising awareness. I also wanted to channel other students’ desires to help into producing practical outcomes, like our Peer Mentoring Program and Journal Clubs, with goals to ultimately benefit those with ASD – that is the action part. If I couldn’t directly help my cousin, the least I could do was to try to help others.
In the end, the real reason I attended the conference was the opportunity to be in that sea of 200 passionate family members and advocates – psychologists and teachers and grandparents and the ASD people themselves. The IMFAR Community Conference was, for me, a chance to be around those who understood and cared about everything autism; it was an chance for me to be recharged and re-inspired to continue doing what I had set out on doing all along: to play my part in the ASD community.
This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.
Yesterday I listened to a very interesting talk from Catherine Lord, Ph.D., one of the creators of the ADOS test. ADOS is the “gold standard” in the world of autism diagnosis, and she’s a leading figure in the world of autism testing and evaluation, so I jumped at the chance to hear her thoughts on where we’re headed in that regard.
People who receive an autism diagnosis are told they have one of three conditions: Autism, Asperger’s, or PDD-NOS. The big question is: who should be diagnosed with what? Is there a coherent sense of classification, or is it merely arbitrary or random? She reviewed the diagnostic data for several thousand spectrumites in an effort to determine what caused a person to end up in one of those three categories.
To her surprise, after analyzing the data, she found the principal predictive factor had nothing to do with the individual. Looking at records from a number of good university hospitals, she found places who called almost everyone Asperger, and other places where everyone was PDD-NOS. There was no discernible pattern of variation between individuals; they seemed to simply get different diagnoses in different places.
Was there more to the story?
To answer that, she looked at other factors, like IQ. For example, many people call Asperger’s “autism lite” or “high IQ autism.” Her review of Asperger diagnoses at one Ivy League school bore that out, with their Asperger kids having average IQ of 123. However, other doctors must see Asperger’s differently, because a Midwest clinic in the study has an average Asperger IQ of 85.
She looked at quality of language in older kids and found similar ambiguity. In the final analysis she did not find any consistent measures of the individuals themselves that led to one label or the other being applied.
In my opinion, those findings support the argument that there is no consistent standard that sets the three descriptive terms for autisms apart. A difference at one point becomes invisible at another. For example, you could say four-year-old Mike does not talk so he’s autistic and Jimmy talks up a storm so he’s Aspergers. But what happens when both kids are 10 and they look and sound the same? Were the differences justified? What purpose might they serve by their difference?
Her findings made one more strong argument for combining all autism diagnoses under the heading of autism spectrum disorder, with a described range of disability or affect.
That’s the way things seem to be headed for the next DSM.
At the same time, Dr. Lord expressed concern that many people have a strong personal investment in one diagnostic name or the other, and they should be able to keep using the different terms.
Stay tuned for more tomorrow from IMFAR 2011.
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.
James Durbin is simply amazing! He is such a talent and we are rooting for him on this season of American Idol. James has been diagnosed with both Tourette’s and Asperger’s Syndromes and is an inspiration to us all. He has overcome many challenges and we are proud to support him on American Idol! In order to support him fully, we’ve decided to create alerts to remind you to vote for him each week!
To get connected, friend us on Facebook, follow us on Twitter, or subscribe to receive updates on your mobile phone! All you have to do is text ‘James’ to 30644. We will send reminders out each week to vote for tune in and vote for James and do our collective best as the autism community to support James!
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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.
Zev Glassenberg, star of The Amazing Race: Unfinished Business, is a busy guy! When he is not off exploring the globe and participating in a massive scavenger hunt, he finds time for his art. Zev is a talented artist, that uses innovative techniques to create some amazing work. Zev will paint different types of canvas, than use a giant hole-punch to cut out circles. From there, he assembles a mosaic to form different objects. Here are a few to check out!
‘The Amazing Race:Unfinished Business,’ returns to a cast of familiar faces looking to make good on their mistakes. Tune in on Sunday, 8/7 EST, on CBS.
Catch up with Zev Glassenber and Justin Kanew in our exclusive interview here!
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!