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Posts Tagged ‘diagnosis’

A Picture is Worth a Thousand Words – The ASD Video Glossary

July 6, 2010 1 comment

Social reciprocity, joint attention, sensory defensiveness, hand flapping, and echolalia.

These are just a few of the terms which may sound foreign to a parent who suspects his child may have autism. And even when you look up a word, it is hard to visualize the concept. What exactly does hand flapping look like? What does echolalia sound like?

Autism Speaks, together with First Signs and Florida State University, developed a web-based video glossary to help parents and professionals learn more about the early warning signs of autism spectrum disorders (ASD). The glossary contains over a hundred video clips and is available free of charge, to help parents of children suspected of or recently diagnosed with autism better understand some of the words and terms they might hear used in association with ASD. Whether you are a parent, family member, friend, physician, clinician, childcare provider, or educator, it can help you see the subtle differences between typical and delayed development in young children and spot the early red flags for ASD. Video clips are used to show examples of terms such as echolalia and hand flapping. In many cases, side-by-side video clips show behaviors that are typical in contrast with those that are red flags for ASD. All of the children featured in the ASD Video Glossary as having red flags for ASD are, in fact, diagnosed with ASD.

If you suspect autism or are in the process of obtaining a diagnosis, I highly recommend you utilize the video glossary, which can be found here: http://www.autismspeaks.org/video/glossary.php.

Please note: the ASD Video Glossary is not a diagnostic tool.

In Their Own Words – Great Strides

May 11, 2010 44 comments

My son, Christopher Fitzmaurice, was diagnosed in 1988 at UCLA by one of the foremost authorities in the field in autism, Dr. BJ Freeman. We then had two confirming diagnoses. We got Chris all of the services that were provided over the years and on our own, paid for additional speech therapy (five days per week) and much more. As we moved throughout Chris’s life, I always kept in touch with Dr. Freeman and used her as a “resource” at different times so we knew what to do next.

Over the years, a boy who didn’t even speak intelligibly at 11 (he had been kept back twice to be “mainstreamed”) continued to improve at light speed. By the time he was 17, I flew back to California with him to see Dr. Freeman (who was still at UCLA) and she was “amazed” to see how well he was doing. Over the next two years he shocked everyone and they “raised’ him one grade. At 19, he was accepted to UNC Charlotte and graduated in four years with close to a 3.0 GPA in Sports Medicine. He did so well in fact that he was accepted for his Master’s Degree in Sports Medicine at UNC-C, which has amazed everyone who knew him.

At age 24, we just flew out again to see Dr. Freeman and she was absolutely “blown away.” Tears all the way around. The improvement since she saw him at 17 was “ten-fold.” But what she said, I feel, is really important for young parents today whose child was just diagnosed.

“Michael, a ‘number’ of the kids that were diagnosed back in the 80’s with autism are doing very well today. Working, some going to college, some in graduate school like Chris.”

She further said that some kids were so good on the computer, for instance, that companies actually were looking for adults with special skills.

I remember we didn’t have much hope back when Chris was diagnosed in the late 80’s. Yet here’s one of the foremost authorities on the subject of autism who says many years later,  that she has “seen with her own eyes” great strides by children with autism.

Young parents need to know this.

This “In Their Own Words” essay is written by Michael Fitzmaurice of Charlotte, N.C.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.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.

PBS’ This Emotional Life and Autism Speaks Present: “Growing Up With Autism”

April 26, 2010 7 comments

TUNE IN – “Growing Up with Autism” webinar
Tuesday, April 27, 1-2 p.m. EDT

Join a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) to learn what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill will lead a discussion with  Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, to address the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.

The panelists will also focus on the different needs and abilities individuals with an ASD have in the hope of generating acceptance and support in the community.  This poignant webinar will combine professional experts with personal experience to offer unique insights and perspectives that will be valuable to all who are touched by this increasingly common spectrum of neurodevelopmental disorders.

To register for the free webinar, please visit https://www1.gotomeeting.com/register/563407008.

Stay informed about “This Emotional Life’s” on-going webcasting events with thought leaders in the fields of mental health and wellness by signing up for their bi-monthly newsletters.

If you miss the webinar, we will have information soon about how you can view it. Please stay tuned!

Navigating the First 100 Days After Diagnosis

How Cool is That?

This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.

A few weeks ago, in northern Maryland, we received the gift that kept on giving: two back-to-back blizzards that delivered nearly four feet of snow. Housebound for several days, I began to gain a better understanding of the phrase stir crazy, and I turned, like many people, to the Internet for solace.  Next time you are snowed in, stir crazy, or even simply curious about what families are saying about autism spectrum disorder (ASD), you should know about the Interactive Autism Network (IAN) and IAN State Stats, in particular.

IAN State Stats is a tool that shows you how families have responded to questions administered by IAN Research, the largest online autism research project.  IAN State Stats summarizes data on complex issues to indicate the overall status and trends in autism treatment, diagnosis, and expenditures. People involved in policy and public health decisions use these tools to compare state performance against national performance and to signal key issues to be addressed through policy interventions and other actions.  The data used for analysis reflect the current IAN Research data. 

Here is one of the charts from IAN Stat Stats:

This graph shows the mean (average) amount of time in months between the time that parents first felt that something was wrong with their child’s development to the time that the child was first diagnosed with an ASD. It compares the data reported by research participants in Maryland (the state that I selected) to the U.S. as a whole. Considering the vital importance of early intervention, this lag time (gap) between the time parents of children with ASD recognize that something is wrong and when they are able to get a diagnosis is of interest to policy makers and advocates.

The information presented is based on an analysis of responses from the questions:

  • How old was this child when you FIRST became concerned that something was wrong with his/her development? (Choices include a range of ages)
  • What was this child’s FIRST autism spectrum disorder (ASD) diagnosis?
  • When did this child receive this FIRST ASD diagnosis?

You can see that the lag time is very long, and that it varies widely by ASD diagnosis. You can also see that the lag time in Maryland is not very different than that in the U.S. as a whole.

If you look at a state in which people have less access to care, such as Louisiana (below), you can see that the lag time for most ASD diagnoses is much longer there than for the U.S.

Though these results are discouraging, exploring the IAN data is a pretty cool way to spend a snowy day.

Find out more about IAN State Stats and how you can participate in the IAN Project.

5|25: Celebrating Five Years of Autism Science Day 23: Gastroenterology consensus recommendations provide recognition of the need for specialized approaches to GI problems in children with autism

February 23, 2010 1 comment

In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 23rd item, Gastroenterology consensus recommendations provide recognition of the need for specialized approaches to GI problems in children with autism, is adapted from a 2009 press release. 

Gastrointestinal (GI) problems are a commonly expressed concern of parents of children with autism spectrum disorders (ASD), but families have often found it difficult to find appropriate care for these issues. In December 2009, a consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal disorders in children with ASD were published in Pediatrics. These recommendations are an important step in advancing physician awareness of the unique challenges in the medical management of children with autism and will be a prelude towards the development of evidence-based guidelines that will standardize care for all children with ASD. The reports highlighted the crucial need for information to guide care, and emphasized the critical importance of fostering more research in this area, including genetic research, to support the development of these guidelines.

“The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches,” reacted Dr. Dawson. “Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks’ Autism Treatment Network (ATN). Dan Coury, M.D., ATN medical director, commented, “We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines.” In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. “Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians,” added Dr. Dawson.

The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.

In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, “The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN’s on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD.”

Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there’s not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) – the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.

Did you know?:  Autism Speaks’ Autism Treatment Network (ATN) is developing  evidence-based guidelines that will provide specific guidance to physicians on how to address a number of medical issues of concern for children with ASD.  The ATN is currently piloting a GI guideline algorithm (decision flow charts) for the assessment and treatment of constipation, and a sleep guideline algorithm for insomnia. The ATN is also working on guidelines in the areas of psychopharmacology and neurology. For more information on ATN guideline activities, please see www.autismspeaks.org/airp. 

In Their Own Words – All You Need is Love

February 18, 2010 1 comment

I guess she is just depressed because her overbearing sister steals all of the attention. That’s why she doesn’t smile, run, play and laugh like a normal toddler. If I plan to home-school this child I have got to figure out why she hates to practice her ABCs and manuscript. She doesn’t care if she gets a sticker or not. I know she knows how to do it; she is just refusing. Her head is down in her arms on the table. Is it really possible for a 3-year-old to be this stubborn? She won’t even come out for a cookie!

My mom used to get motion sickness; maybe that’s why my daughter gets sick every time we get in the car. But why does she spin herself in circles in the backyard for what seems to be hours at a time without even getting dizzy? That just doesn’t make sense. It is strangely funny and weird that she likes to throw herself backwards on the floor over and over and over again as her father and I sit and watch completely bewildered and entertained at the same time. What two-year-old does that?

“I did. I asked the doctor again. She said it’s just her personality,” I tell her father.

Why won’t she get dressed? There is no reason for her to be so difficult about getting dressed. Just put on the jeans and shirt with the cute little design and let’s go already! I am going to be late to work again! She’s four years old. Her sister has been dressing herself and changing numerous times a day, much to my dismay, on her own since she was at least two. What is the problem? This child doesn’t seem to want to wear anything except pajamas or sweat suits. She can’t wear sweat suits everyday.

How did she get that math problem? She’s not even in school yet. Was she even listening to us? She was in the other room. She just blurted out the answer like it was nothing to her.

Why is she overreacting? I am just brushing her hair. I am being so gentle. It would look so cute if she would just let me put this pony tail in.

I read an article on autism. Eva doesn’t have autism. It is an interesting subject though. I’ll read it and think that thankfully my child does not have autism!

Okay, she’s five. It’s time to learn to ride a bike. Oh my goodness, she’s going to hurt herself if I let go. Why can’t she get this?

Look both ways when crossing the street. Hold my hand when we walk in the parking lot. You have to watch where you are going. Stay close to me. Be aware of your surroundings. Don’t wander in the store. Now I understand why parents have leashes for their kids. I have to physically have a hold on my child or she will disappear. Don’t talk to strangers. Yes, the store clerk is still a stranger. Please don’t tell everyone we meet such personal family information. It is a good thing I don’t get embarrassed easily. Just smile, take her hand so you don’t lose her and walk away.

Big girls take showers, not baths. What is the problem? Why is she crying? Outright refusal. It has been twenty minutes and she still hasn’t turned the shower on. I don’t even take that long of a shower. It has been an hour since she got in. Okay, she’s finally done. Did you wash your hair? It’s not even wet. What were you doing in there for an hour? Okay, you have to get back in. More crying. I will come in with you and wash your hair for you.

I justify my actions. “I do not spoil her! How outrageous! No, I don’t make excuses for her!” I know, although I can’t understand it, she cannot do it by herself. So I do it for her.

Back to the doctors. It’s a different doctor and this time, I insist. “There is something wrong. She is seven. She cannot ride a bike. She would trip over a blade of grass. She’s awkward.” She has my compliant daughter do a few minor gross motor activities and tells me she is not where she thinks she should be and sends us to a physical therapist that does some more in-depth testing with her and finalizes that she has Sensory Processing Disorder. Phew! That explains it! That’s why she won’t wear jeans. That’s why she hates showers. That’s why she begs for back rubs. That’s why she falls so much. Eva spends a year in physical and occupational therapy. I notice most of the other children in therapy definitely have autism, yet I brush off the thought once again.

Two years later we are doing homework. I’m sitting right next to her, keeping her on track the whole way and trying to be patient. I am explaining everything in a way she can understand.

“Wow! Did she just re-write that entire paragraph word for word after only reading it once? I can’t do that. I’m going to Google that.” And so I do because I am so intrigued. Every site it takes me to mentions autism.

At the age of nine, I take her to see a neurologist. I am convinced there is more to my child’s strange and intermittent brilliance, odd ways and sensory issues. How can I understand her? How can I help her, and how can I have a relationship with my child if I don’t know what is going on inside that mind of hers? After a few checklists and hour-long sessions of questions regarding Eva’s social interaction and behavior and we have a diagnosis! Asperger’s Syndrome. Tears form, but they are tears of relief. The relief of finally knowing.

For nine years, her father has insisted that something was just not right. When he suggested autism to me a few years back I told him I was on top of it. She had sensory issues, but I knew. My gut and my instincts told me daily that she just was not “normal.” I wanted to believe her doctor. It is just her carefree personality. So she’s different? She’s just innocent and naïve. That can be a good thing, right?

When I called her father to tell him about the diagnosis, he responded, “I told you. No one ever listens to me. She is to stay in a normal classroom. She is not stupid. I think she’s a genius. Do you hear me? Don’t let them dump her off.” I promise him that I won’t. I read every piece of information I can find on Asperger’s Syndrome and high functioning autism and I am convinced he knew because he had it, too.

My daughter is now going to be 11 years old. She is possibly the coolest person I know. She attends a regular school, is in a regular classroom and is on the honor roll. Her teachers, therapists and IEP team are extremely cooperative and proactive. She is in several social skills groups and she takes showers now. She has friends, attends sleepovers and although not gracefully, she rides a bike, dances and roller skates. She makes us laugh and makes us wonder. She thinks life is a bowl of cherries. She doesn’t sweat the small stuff. She is patient, faithful and so forgiving. She is forgiving of the world for not always understanding and not always being so kind. Forgiving of my ignorance at what she is talking about sometimes. Forgiving of the ever-confusing way us atypicals go about things. Eva continues to be kind though, to everyone she meets. She is incapable of being mean or malicious or untrue.  

“All you need is love, mom” were the words of my three-year-old-Beatles-fan daughter who has Asperger’s Syndrome.

 This “In Their Own Words” essay is written by Launa M. Taylor of Willoughby, Ohio.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.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.

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