By Lisa Ackerman
In December 2013 the University of Minnesota published a study regarding the Autism Spectrum Disorder (ASD) population in Minneapolis. The results documented the ASD overall rate: 1 in 48. Another major finding from the Somali population showed autism rates are 1 in 32 (1.)
In a new report released today two startling findings (2) were announced:
- 2.24% of all US children have autism (increased from 1.25% from 2011-2013 data)
- 1 in 45 are now living with autism (increased 1 in 68 from a 2010 survey)
What is always incredibly shocking to me is the explaining away of any new, increased prevalence number. Here is what USA Today (3) reported:
“A new survey has found a big jump in the number of children with autism, although researchers caution that the increase is likely due to the way that questions were asked.”
I am wondering what is the most popular question today for expectant parents? Is it what car seat should we buy? Should we let the baby sleep in our bed? When should we start feeding the baby solids? Bottle or breast fed? Or is it: WILL OUR CHILD HAVE AUTISM? Sadly the rate continues to go up and for anyone planning on or having a baby I’d move the autism question to the top of your list.
Remind me again how autism is not declared an epidemic? Why is it most wish to explain autism away? Meanwhile, at TACA, we add 600 new families every month that are struggling with an autism diagnosis and concerned about their child’s future.
I am not surprised by the new autism prevalence, I am just sad. What does the number have to be for someone outside the autism community to care, activate and drive for answers?
(Note: We just made this graphic 2 weeks ago. We have to update it again.)
By: Melanie Smith, Parent of an adult son with autism
We have all seen kids around town heading to games in baseball or soccer uniforms. Their teams are concentrating on mastering the techniques and skills necessary to advance to the next level of the team sports ladder.
But when it comes to team sports for children and teens on the autism spectrum, the emphasis is completely different: it’s not about the sport – it’s so much more.
What are the benefits of team sports for children and teens on the spectrum? While they might look fantastic in their team uniform, will they learn anything of lasting value?
The answer to both questions is a resounding yes
Many experts have documented the expected benefits of physical exercise to individuals with special needs such as the improvement of coordination, boosting of the immune system and improvement of mood.
However, there are many unexpected benefits of sports programs designed for special needs such as:
- The focus is on team building, making friends and improved self-esteem, not competition
- Athletes gain a sense of accomplishment each week that is not based only on skill level but simply by showing up in uniform and getting high fives for working at their own ability.
- The athlete gets a trophy with their own name on it to put in their room – just like other kids.
- Parents spend time with other parents who “get it” and establish a sense of community and support.
- Athletes and parents alike get the feeling of belonging and not standing out; especially when an athlete gets upset and has a behavior on the field/court. Everyone at the game understands and works together to turn it into a positive outcome.
- It is a fantastic opportunity to practice social skills with teammates in a non-classroom environment. Whether it’s just kicking a ball back and forth or learning to congratulate teammates, the athlete is encouraged to communicate in both verbal and non-verbal ways.
- Team sports provides an additional opportunity for dads and other male role models to spend time with their athlete. During the week, children with special needs spend time with therapists and educators who are predominantly female. On the weekends, athletes benefit from interaction on the field/court from both male and female coaches and Team Mentors.
- The athlete is able to practice learning new skills from new people; all in a “safe” environment.
Bryan recently had his first experience in playing team sports with a local sports league aimed at serving children and teens with special needs. He started his first day of basketball afraid to walk onto the court; hiding on the sidelines. Coach Chuck, a Spirit League Board Member and former Athletic Director, sat on the floor with him, offering encouraging words. While it took nearly 30 minutes on the sidelines, Bryan eventually joined his Team on the court; passing the ball to his teammates.
The next week, Bryan walked onto the court of his own accord, timid, but willing to participate in circle time activities with his Team. By week 3, Bryan was actively playing ball with his Team – The Rockets. The picture of the fearful athlete who started just weeks before was forgotten. It was an amazing experience to watch the confidence build in Bryan each week from the encouragement of his coaches and teammates. By the end of the season, Bryan’s confidence was sky-high. He held his trophy with a huge smile; knowing he had come a long way. The cheers from the stands recognizing Bryan for his efforts were almost as big as his smile.
About Spirit League
Founded in 2004, Spirit League was created by the parents of children who were unable to fully participate in team sports due to challenges. Spirit League is tailored to meet the specific needs of children on the autism spectrum and other developmental or physical disabilities who are between the ages of 6 and 20+ years old and who are ambulatory. For our athletes, our goal is to foster self-esteem, enhance social skills and build friendships. For our parents, our goal is to strengthen relationships, provide support and develop community.
Three sports are offered each year including basketball (January – March), baseball (April – June) and soccer (September – November). For more information or to register for the 2016 Basketball Season (register November 1-30, 2015), go to www.spiritleague.org.
TACA National Conference Coordinator
TACA hosts events every week somewhere in the country. There are coffee talks, family picnics, TACA Meetings, Autism Learning Seminars, Family Hikes, TACA Birthday Parties and the list goes on. It’s a fact that TACA has some of the most creative volunteers you’ll ever meet. If they can dream it, they will plan it and invite families affected by autism to join them. New to this list of events for 2015 is the National TACA Autism Conference.
TACA will host the National TACA Autism Conference on October 23 and 24, 2015 in Costa Mesa, California. I will be among many TACA parents getting help and giving help. If you haven’t been to a TACA conference, you are missing out and I hope you can attend in the future. If you’ve been there, you know what I’m saying. TACA on your laptop is a great resource but up close and in person, it’s a life changer.
Why come to the National TACA Autism Conference? There are many reasons. A few of those reasons are exclusive to the TACA Conference experience.
- The Conference Workbook – Everyone who registers receives a Conference Workbook upon arrival. This workbook contains Powerpoint presentations which will be given throughout the conference, organized by track, so that you can follow along and take notes without having to write down every single detail. This workbook is yours to keep as an ongoing resource long after the conference is over. It’s our way of sending a little TACA home with you. More great reasons to attend: included in your registration is your choice of three conference tracks to follow, and the best speakers with the latest and greatest information. Take note of the Law Day Track on Friday aimed at legal issues, IEPs and assessments. Also on Friday is a Beginner Parent Track aimed at helping parents who are newer to the Autism Diagnosis of their child. This is a great place to get started. And if those two tracks don’t quite fit your needs, you will want the information from the Advanced Medical Track. Friday will also feature a keynote presentation by Dr. Daniel Amen on Brain Spect Imaging. An Exhibitor Mixer will take place as well offering chances to learn from exhibitors and a chance to win prizes. Saturday also offers three tracks to meet your needs including an Advanced PANS/PANDAS Track with a trio of speakers bringing you the most up-to-date information. That track continues into the afternoon with advanced medical information. Tracks II and III will offer a variety of autism treatments, information and resources for your child affected by autism as well as for your family. Don’t miss out. Saturday also offers a keynote presentation with Dr. Sue Swedo of the National Institute of Mental Health, NIMH. What if you can’t attend? There is plenty of information to go around so don’t be afraid to share the conference information with one of your friends even if you can’t attend yourself. There will still be support and information for you with the TACA Mentor Program, TACA Live chat, TACA USA Yahoo Group, Social Media with TACA’s Facebook page and the content filled website at tacanow.org.
- Lunches – To help you stay at the conference, your lunch is included. Parents know that mingling and learning will happen over lunch. Stay for it.
- Lunch & Learn – The addition of a heartfelt speaker in a casual setting will help energize you to get you through the afternoon instead of hitting the after-lunch slump. Bring your lunch in and listen while you eat.
- TACA Mentoring – TACA trains experienced parents to be a part of their long-standing TACA Mentor program. This is a chance to meet TACA Mentors in person. So much of their support is delivered online, via email so take the opportunity to meet these supporters in person. Have you been assigned to a TACA Mentor already? Wondering how to get 1:1 TACA Support while you’re at the conference? It’s simple. Just ask.
- Conference Coffee Talk – TACA is famous for parent support in the way of TACA Coffee Talks across the country. So we’re pumping it up and bringing it to the National Conference on Friday evening. Doors will open at 6:55pm. When you walk in the room, you’ll see a list of more than 23 tables with their designated topic and autism expert. You choose your table based on the information you need most. Topics will include Beginner Biomed, Seizures, Puberty, IEP, New Parents, Diet, Gut Health, Enzymes, Girls, Dads, Dentistry and more. This is your chance for small group questions and answers as well as learning from the questions of others. You might want to bring a notebook for this.
More great reasons to attend:
Included in your registration is your choice of three conference tracks to follow, and the best speakers with the latest and greatest information.
Take note of the Law Day Track on Friday aimed at legal issues, IEPs and assessments. Also on Friday is a Beginner Parent Track aimed at helping parents who are newer to the Autism Diagnosis of their child. This is a great place to get started. And if those two tracks don’t quite fit your needs, you will want the information from the Advanced Medical Track. Friday will also feature a keynote presentation by Dr. Daniel Amen on Brain Spect Imaging. An Exhibitor Mixer will take place as well offering chances to learn from exhibitors and a chance to win prizes.
Saturday also offers three tracks to meet your needs including an Advanced PANS/PANDAS Track with a trio of speakers bringing you the most up-to-date information. That track continues into the afternoon with advanced medical information. Tracks II and III will offer a variety of autism treatments, information and resources for your child affected by autism as well as for your family. Don’t miss out. Saturday also offers a keynote presentation with Dr. Sue Swedo of the National Institute of Mental Health, NIMH.
What if you can’t attend? There is plenty of information to go around so don’t be afraid to share the conference information with one of your friends even if you can’t attend yourself. There will still be support and information for you with the TACA Mentor Program, TACA Livechat, TACA USA Yahoo Group, Social Media with TACA’s Facebook page and the content filled website at tacanow.org.
Click here to print out or post our conference flyers. Share them with providers in your area, post them on your social media sites and help TACA reach more families so that their children can be helped to be as healthy as possible.
Ready to register?
Register for The National TACA Autism Conference on October 23rd and 24th in Costa Mesa, California: http://tacaautismconference.com/west/
I look forward to meeting you at the conference alongside my fellow TACA Coordinators.
TACA National Conference Coordinator
Janice is the conference coordinator for Talk About Curing Autism (TACA). She is also a co-coordinator with the TACA North Dakota chapter where she lives and has been volunteering since 2008. She will be attending the National TACA Autism Conference as a volunteer Chapter Coordinator, TACA Conference Coordinator and a mother.
By Gita Gupta
Study Reports That the GFCF Diet is Nutritionally Safe
A recent double-blind, placebo-controlled study by Hyman et al (2015) http://www.ncbi.nlm.nih.gov/pubmed/26343026 looked at the Gluten-free, casein-free (GFCF) diet and established that it is safe and does not carry any nutritional risk. The study excluded kids with ASD who have gastrointestinal symptoms. For other ASD kids, the study states that – “… the diet can be safe for other children with ASD if properly implemented and monitored for nutritional sufficiency.”
Study Reports Safety but no Behavioral Benefits From The GFCF Diet. Why?
In contrast to anecdotal reports from thousands of parents, the study found no benefits from the diet. One reason for the lack of positive results could be because the study’s approach to GFCF is very different from how the diet is implemented in real life by parents who are successful with GFCF. Other problems with the study include the following –
- The 4-6 week period might be too short.
- The sample is skewed – kids who might be expected to show the most benefit were excluded.
- The sample size is too small to mean much.
- Allowing soy may have compromised the results.
- The study did not screen for many common food allergies and hypersensitivities, nor remove these allergy triggers from the kids’ diets.
- The study did not screen for other known food causes of hyperactivity nor remove these from the kids’ diets.
- The study does not measure medical measures of benefit.
A detailed discussion of these issues follows. The bottom line is that in this case, “an absence of evidence is not evidence of absence.” The study shows an absence of evidence about the benefits of GFCF, which is probably due to its many problems with study method and participant selection. It does not establish evidence that benefit is absent.
Concerns about study method, participants & outcome measures
The study admits that the 4-6 week period might be too short. The trial period of 4-6 weeks is based on findings from patients with gastrointestinal (GI) issues. This study excluded participants with known GI issues, so the 4-6 week trial period seems arbitrary and possibly too short. Even within this short study period, as many as 20 dietary infractions were recorded. As the study admits, if this period was indeed too short, then it compromises the results.
The sample is skewed – because kids who might be expected to show the most benefit were excluded. The study excludes all children who might have been expected to show the strongest positive reactions to GFCF in the study’s short timeframe – such as children with gastrointestinal issues.
The sample size is too small to mean much. The study only enrolled 14 kids. As study acknowledges – “the small sample size limits interpretation and generalizability of findings.”
The study acknowledges that allowing soy may compromise the results. According to the study, one concern with its design is that “… some investigators place equal importance on removing soy.”1 Here’s why –
- Soy proteins have known cross-reactivity with bovine casein proteins2.
- Soy, as well as other top IgE allergens can contribute to hyperactivity and irritability in children with autism3.
For these reasons, parents who have seen results from GFCF also remove soy from the diet. Unlike these parents, the study allowed soy – and acknowledges that this may have compromised the results.
The study did not screen for the most common food allergies. Nor did it remove these allergy triggers from the kids’ diets.
Food allergies are estimated to affect 9% of children aged 3-5 years and over 30% of these children have multiple food allergies4. Allergic reactions can cause neuropsychiatric symptoms, such as irritability and hyperactivity. Moreover, the discomfort and pain associated with allergic diseases can aggravate behavioral symptoms in ASD children. In this study, participants were tested for allergies to milk, wheat, eggs and corn. However –
- The study did not test for allergies to soy, peanuts (the #1 allergy in terms of prevalence), tree nuts, shellfish and other food proteins that are common allergens. Nor is there any mention of excluding these allergy triggers from the GFCF diet given to the study participants.
- Similarly, the study design did not screen for non-IgE mediated hypersensitivities5 to food proteins, including soy.
These confounding factors probably contributed to the lack of evidence that the diet is helpful.
The study did not screen for known food causes of hyperactivity nor remove these triggers from the kids’ diets.
Hyperactivity caused by food colors has been noted in the literature in numerous studies6 as well as anecdotally by parents. Similarly, food reactions to additives and preservatives like sulfites have been reported in the literature as well as anecdotally by parents. Therefore, parents who are successful with the GFCF diet typically use homemade food free of food colors, additives and preservatives. The study does not screen for these known causes of hyperactivity, nor does it factor these concerns into the diet given to the kids in the study.
The study does not measure medical measures of benefit.
The study focuses only on overt, clinically obvious behavioral measures that show up within 4 weeks or so. It lacks before-and-after lab testing for improvements in immune or metabolic parameters that may be more gradual, and take time to manifest in terms of improved behaviors. For example, the study did not look at lab testing such as –
- Standard measures of inflammation
- Standard measures of gut health on blood tests and stool tests
- Changes in gut flora
- Changes in immune markers7
- Mathews (2008) “Nourishing Hope for Children with Autism: Nutrition and Diet Guide for Healing Our Children.”
- Curciarello (2014) “Targeting a cross-reactive Gly m 5 soy peptide as responsible for hypersensitivity reactions in a milk allergy mouse model” http://www.ncbi.nlm.nih.gov/pubmed/24416141
- Jyonouchi (2010) “Autism spectrum disorders and allergy: observation from a pediatric allergy/immunology clinic.” http://www.ncbi.nlm.nih.gov/pubmed/20441426
- Allergy Statistics, American Academy of Allergy, Asthma and Immunology http://www.aaaai.org/about-the-aaaai/newsroom/allergy-statistics.aspx
- Spergel (2006) “Nonimmunoglobulin E-Mediated Immune Reactions to Foods” http://www.aacijournal.com/content/2/2/78
- Schab (2004) “Do artificial food colors promote hyperactivity in children with hyperactive syndromes? A meta-analysis of double-blind placebo-controlled trials” http://www.ncbi.nlm.nih.gov/pubmed/15613992
- Jyonouchi (2005) “Evaluation of an association between gastrointestinal symptoms and cytokine production against common dietary proteins in children with autism spectrum disorders” http://www.ncbi.nlm.nih.gov/pubmed/15870662
By Lisa Ackerman
On September 15 2015, Dr. Thomas Insel announced he will step down as a director of the National Institute of Mental Health (NMIH) and Interagency Autism Coordinating Committee (IACC) (1.) This change is effective November 1, 2015.
On this blog we have written about the IACC and their efforts since inception back in 2006. You can find those blogs here (2.)
For the new incoming NIMH and IACC Director, I would like bring you up to speed on autism. It is the fastest growing disability affecting the most children in the United States (3.) A Massachusetts Institute of Technology (MIT) research scientist has made a dire prediction that autism could affect 1 in every 2 children in the U.S (4.) Autism is also expensive, recently soaring from $168 billion to $268 billion annually (5.)
After serving the autism community for 15 years and working with over 45,000 families, I see areas of needs that can and should be addressed. Here is a summary of changes that can help families living with autism:
- Based on CDC autism estimates, declare autism an epidemic and public emergency. We need to treat autism with the urgency it warrants: 1 in 68 children are living with autism in the United States.
- Define and collect a true census of individuals affected by autism. It is important to indicate that four year old estimates based on survey samplings do not work. Real numbers and details such as age groups and severity are urgently needed to review and address their unique needs.
- Push for subtyping to determine appropriate treatments and therapies to meet the unique needs of each individual (6.)
- Since 2006, over $2 billion has been spent on the IACC. Families are not experiencing any changes to services or help for these costs. No innovative treatments have been found. I would like to propose the following changes to the IACC:
– Consider a more diverse board at the IACC to include some of the world’s researchers in cause and innovative treatment such as: Dr. Martha Herbert, Dr. Jill James, Dr. Richard Frye, and Dr. Dan Rossignol. It is my opinion that the current IACC board lacks in ground-breaking research and medical treatments happening today
– Push the U.S. Dept. of Human Health (HHS) and IACC to collaborate and recognize the needs for services and support for families. We cannot operate in a vacuum.
- Collaborate with families via support groups in identifying needs for those living with the autism today.
- Outside traditional therapies, medical treatments are helping individuals with autism live healthier. Based on new research, co-morbid medical issues exist with autism. Where are the initiatives addressing these concerns to define answers? (7.)
- Identify a task force to address the current and future needs of adults living with autism.
- Prioritize and evaluate all possible environmental causes of autism.
- Operate with a sense of urgency in your strategic plan. We cannot waste another moment. We must drive for answers.
I would be happy to discuss these items in more detail with a future director of the NMIH and IACC. We need positive change. We need help for families and individuals living with autism. We can no longer afford the status quo.
1) Insel Departure announcement http://www.nih.gov/about/director/09152015_statement_insel.htm
2) IACC TACAnow blogs:
3) Autism prevalence http://www.tacanow.org/news/cdc-releases-autism-prevalence/
4) MIT dire prediction http://www.autismdailynewscast.com/warning-half-of-all-children-will-have-autism-by-2025/12873/laurel-joss/
5) Annual autism costs soar http://tacanowblog.com/2015/07/30/the-annual-cost-of-autism-continues-to-soar/
6) Subtypes in autism http://tacanowblog.com/2014/04/11/science-and-subtypes-in-autism/
7) Children with autism have other health problems http://tacanowblog.com/2012/10/15/many-children-with-autism-have-other-health-problems/
por Mari Nalbandian
Muchas veces se dice que el autismo es como una montaña rusa, vamos un día de subida y en cuestión de unos días (o hasta unas horas) vamos de bajada…a veces sin frenos. El autismo hay que enfrentarlo con amor y gran paciencia. Siempre digo que el que no tiene paciencia tiene que buscar la forma de encontrarla, pues es primordial en la vida familiar y para su ser querido con autismo. Siempre va a existir algo que nos robe la oportunidad de sonreír, pero esto es parte de la vida cotidiana, sea en la vida de una familia que enfrenta el autismo o no. Estoy segura que cada día hay algo que alegra nuestra alma. El corazón alegre es la mejor medicina y debemos buscar aquello que nos haga bien. Muchas veces tenemos que buscar unas horas de paz para poder dar lo mejor de cada uno. Es importante buscar un “hobby” o algo que nos ayude a nutrir la mente y el espíritu para así recibir la energía necesaria y poder seguir luchando por sus hijos con autismo.
El identificar lo que nos pasa con otros padres que se encuentran en el mismo trayecto es una manera más de aliviar nuestras cargas o simplemente compartir preocupaciones y buscar formas para confrontar nuevos retos. Todos podemos aprender de las experiencias de otras familias y así ayudarnos a seguir adelante. Asistiendo a actividades como nuestras charlas de apoyo y educación, conferencias anuales y otras actividades familiares puede ayudarles a navegar la vida diaria de una manera mas positiva cada día. Realmente lo que quiero decirles a todos es que no teman, pues no están solos. Nuestros chicos (¡algunos no tan chicos ya!) están pasando por diferentes etapas de crecimiento, lo cual significa que hay algunas cosas que están fuera de nuestro control. Investiguen sobre los temas que les preocupen, prepárense y conozcan como enfrentar una nueva etapa que puede estar “a la vuelta de la esquina”. Enfóquense en ayudar a sus hijos con todo su amor y dedicación. No esperen hasta el ultimo momento para hacer algo que quizás pudieron remediar meses o años atrás. Observen, pregunten e insistan en entender el porqué de cada cosa que pueda afectar a sus hijos. No esperen que el personal escolar sea únicamente el responsable de los avances de sus hijos. Realmente la mayor responsabilidad la tienen los padres, pero como tal, tienen que educarse para buscar la manera mas adecuada de ayudar a sus hijos con más efectividad. El balance es primordial, pues obsesionarse hasta cierto punto sin importar el resto de la calidad de vida familiar puede resultar en grandes consecuencias.
Así que busquen comenzar un nuevo año escolar apoyando a sus hijos sin olvidarse de estar bien armados de información para enfrentar cualquier posibilidad de una batalla, sin miedo y “dándole muchas ganas”. Entienda bien los derechos de educación especial para obtener los servicios educacionales mas apropiados según las necesidades individuales de cada hijo/a. Visite nuestras charlas y venga preparado a aprender sobre todo tema relacionado al autismo: la mejor decisión para ayudar con el futuro de sus hijos.
By Lisa Ackerman
When a serious developmental disability increases from 1 in every 10,000 US children in 1970 to 1 in 68 in 2015, how should the government respond (1)? One would think perhaps scale up screenings? Increase support? Look into cause and treatments? Sadly, the newest report is the opposite, to put a stop in screening all children. It is the exact opposite of the response autism should receive (2.)
Despite the American Academy of Pediatrics (AAP) recommendation to screen ALL children because “screening is quick, affordable and has no substantial risk” a governmental group, the U.S. Preventive Services Task Force (USPSTF), is trying to quash one of the only ways to get kids into early intervention therapies.
This is what the new president of the AAP stated:
“Early identification and referral for appropriate intervention are critical to ensuring that children with autism have access to effective therapies,” said Sandra Hassink, president of the American Academy of Pediatrics. “Research shows that early intervention can considerably improve children’s long-term development and social behaviors.”
So why slow it down?
It’s not just one group in our government slowing down when it comes to autism. There appear to be others.
That other group is the Interagency Autism Coordinating Committee (IACC). The IACC began in 2006, coordinating all efforts within the Department of Health and Human Services concerning autism spectrum disorder (3.) On this blog we have written about them many times (4.) They were just granted additional funding in 2014, but have yet to organize and meet since September 2014.
This is of much concern for families living with autism and for those suspecting it, it’s even worse. Who will be looking out for your child when it comes to something like autism? Waiting for a parent to suspect, bring up the concern and ask for help is not a good strategy. First time parents may not know what to look for when it comes to concerns regarding autism spectrum disorder.
We need to listen to the AAP and be in front of the diagnostics for many reasons. According to the USPSTF, the message appears to be: Don’t screen. Don’t count. Maybe no one will notice.
I hope they prove me otherwise because our children deserve a stronger, more urgent response. Make your universal autism screening feelings known at http://www.uspreventiveservicestaskforce.org/Page/Document/draft-evidence-review106/autism-spectrum-disorder-in-young-children-screening
And lets ask the IACC what the next steps are for addressing the urgent needs for families living with autism https://iacc.hhs.gov/contacting-iacc/index.shtml
- TACAnowblog IACC articles