In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled.
Like the parents of children with autism, grandparents can have different reactions and responses when they learn their grandchild was diagnosed with autism. What was this like for you? What helped you through this difficult time? What gave you hope for the future for your family and grandchild?
By Geri Dawson, Chief Science Officer, Autism Speaks
Last week, a paper was published in Pediatrics that argued against the routine screening for autism by pediatricians. Three investigators who are part of the Autism Speaks Baby Siblings Research Consortium and I submitted a letter to the editor in response to this paper, which has now been published. The link to the original article and the letter are provided below. Our letter provides a strong rationale and empirical evidence to support the American Academy of Pediatrics recommendations that all children be screened for autism at their 18 and 24 month checkups.
This exchange highlights the important role of the scientific research in directly influencing policy and clinical practice. We were able to cite research, much of which was conducted by Autism Speaks Baby Siblings Research Consortium investigators, to counter the inaccurate statements by the authors of the Pediatrics paper.
Join us Wednesday, June 22nd at 5 pm EST for an online Facebook chat with the Family Services Staff. Using the 100 Day Tool Kit as our guide, we will focus on what you can do during the first 100 days following your child’s diagnosis and the steps you can take to get stated.
This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.
Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.
I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.
With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.
On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”
Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”
When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.
So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.
“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 email@example.com. 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.
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 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.
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!
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.
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
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.