Special Needs News - Dementia in Down Syndrome, Fitness of Kids with Autism & Early Diagnosis of ADHD - 30 September 2014

High risk of early onset dementia in people with Down's Syndrome

People with Down Syndrome are twice as likely to get dementia than the general population, according to researchers from Trinity College Dublin.  Researchers also report that people with Down Syndrome get dementia at a much younger age than the general population. For those with Down Syndrome the average age for the onset of dementia is 55 in comparison to 65 and over in the general population.

"This is the first time in history we have ever had a population of people with an intellectual disability who have reached old age and this is something that we should celebrate. However, there are a number of very serious health concerns that we need to better understand in this population. Unless we can address some of these challenges older people with ID are likely to live a poor quality of life as they grow older and ageing in poor health is an empty prize," said principal investigator Professor Mary McCarron.

These findings are part of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (TILDA).   The report is titled "Advancing Years, Different Challenges: Wave 2 IDS-TILDA, Findings on the ageing of people with an Intellectual Disability".

Kids with autism less active than peers, but just as fit

Credit:  Chicago's North Shore on Flickr
Researchers at Oregon State University measured the physical activity and fitness levels of 29 children. Seventeen of the children had autism spectrum disorder and 12 did not.  The children's movements were calculated using accelerometers.  Their fitness levels were measured using testing commonly used in schools. 

Researchers found that the children with autism were more sedentary than those without the disorder.  However, the children with autism's fitness levels were comparable to their peers in all areas except strength.

The study, "Physical Activity and Physical Fitness of School-Aged Children and Youth with Autism Spectrum Disorders" is published in the journal Autism Research and Treatment.

Study shows need for early diagnosis of ADHD

Attention Deficit Hyperactivity Disorder (ADHD) negatively affects young children's school performance and social skills according to a study from the Children's Attention Project in Australia. Researchers studied 400 children ages 6 to 8.  As part of the research, the children were screened for ADHD.  One hundred seventy-nine children had ADHD and the rest did not. 

The children with ADHD performed worse than their peers on all "functional domains" including mental health, academic performance and peer problems.
Credit:  Woodleywonderworks on Flickr
"Already at this stage, which is relatively young, it's very clear the children have important functional problems in every domain we registered," said study lead author Dr. Daryl Efron.  "On every measure, we found the kids with ADHD were performing far poorer than the control children."

In addition, although the children met the screening criteria for ADHD, 80 percent had not been diagnosed with the disorder. Dr. David Fassler, a clinical professor of psychiatry at the University of Vermont College of Medicine called this finding "striking."

"I fully agree with the authors' conclusion that the results of the study underscore the need for earlier recognition and treatment of ADHD in young children," Fassler said.

The study "Functional Status in Children With ADHD at Age 6–8: A Controlled Community Study" is published in the journal Pediatrics.


Longitudinal report shows challenging reality of ageing with an intellectual disability

Children with autism are more sedentary than their peers, new OSU study shows

ADHD Can Hamper School Performance as Early as 2nd Grade, Study Says

Functional Status in Children With ADHD at Age 6–8: A Controlled Community Study

Special Needs, Disability and Air Travel: Some Tips

Credit: Pinguino K on Flickr
For many parents, the idea of bringing their children with special needs on a holiday can strike fear in their hearts, particularly if their journey involves air travel.

Walking through the airport, waiting to check in, going through security screening and just being on an airplane can cause fear, tantrums and meltdowns for children with special needs.

Crowds, lights and noises in airports can cause sensory overload. Going through security, and separation from a parent or guardian for even a short time can be very distressing for any child and even more so for those with special needs.  

Thankfully, some airports and airlines recognize these potential problems and are implementing solutions. Here are some tips for air travel with someone with a disability or special needs:

Credit: Timo Newton-Syms on Flickr
  • Check the website of your airline for any assistance they offer for people with disabilities.  If the website doesn't provide any information, contact the airline directly to explain your circumstances and the help you need.
  • Decide if an "airport rehearsal" would benefit your child.  Many airlines and airports have programs that allow children with special needs to get a preview of what they can expect on their trip. Wings for Autism is one program designed to prepare people with autism for air travel.  Autism Speaks and Jet Blue run another program called Blue Horizons for Autism.
  • If an airport rehearsal isn't possible, prepare your child for your journey using books about air travel. A Guide to the Airport Experience is available to download for free from Autism Speaks.  In addition, you can download Airport Social Stories written by Carol Gray, from the Philadelphia International Airport's website.
  • You can also make your own guide to air travel using pictures and videos of airports and airplanes.  Irish Autism Action describes the steps you should include when preparing for air travel on Dublin Airport's website
  • If you are travelling to or from the United States, check the Transportation Security Administration (TSA) website for information on the accommodations they offer to those with disabilities and special needs. The TSA has a hotline, TSA Cares (1-855-787-2227), for people with disabilities.
  • Make small information sheets/cards with brief information about your child.  Keep a few cards handy. Then, if a problem arises you can give a card to airport, airline or security workers.  This card is a discreet way to let others know you need extra help, patience and understanding. 
Credit: Kevin Dooley on Flickr
  • Get a letter from your child's doctor outlining her disability and any medications she takes. This letter will help if you are bringing medications with you and if your child needs medical care during your journey.
  • If you think the noise of the airport and airplane will present problems, bring headphones so your child can listen to music and/or bring earplugs.
  • Bring your child's favorite toys and snacks to help entertain, calm and/or distract him.
  • Prepare for possible delays - if you have an extra hour or two at the airport because of a flight delay, plan what you will do with your child during that time and make sure your bring any necessary items such as crayons, games, snacks, etc.
  • Prepare your child to answer questions from security or customs staff. Airport security personnel ask some children their names and the identity of the people they are travelling with to ensure the child is with a parent or someone else who has authority to travel with the child.
  • Have your child carry or wear (on a lanyard) a laminated card with his name and your contact information to assist if he gets lost.
  • When planning your journey you should consider the time of the flight, whether it is a direct flight and seating choices.  Paying extra for a direct flight or to pre-book the best seat for your child may be worth it. Seat Guru is a website that shows the layout of seats on different planes and identifies which seats are the best and worst.
Do you have a great travel tip or resource?  If so, please share it in the comments below.

Note:  This is an updated version of a post that was originally published in April 2013.  

4 steps to a great relationship with the teacher of your child with special needs

Credit: US Army RDECOM on Flickr
Teachers spend a great deal of time with our children and have a significant influence on their development.  Parents of children with special needs tend to have many interactions with their children's teachers. Since teachers play such an important role in children's lives, you want to make sure this is a positive experience for you and your child.  Building a strong relationship with your children's teachers benefits both parties by:

  • Enhancing parents' understanding of what and how their children are learning
  • Improving teacher's understanding of children's individual needs
  • Increasing the flow of information between parents and teachers
  • Promoting trust between the parties
  • Fostering a "teamwork" attitude between parents and teachers for the benefit of children
Here are 4 tips to get you started.

Credit: BigRedSmile on OpenClipart

1.  Create a communication link

Introduce yourself to your child’s teacher as early in the academic year as possible. After a quick introduction, schedule a time when you can talk to your child’s teacher in more detail. Do not expect to have a long meeting with the teacher right before or after school – respect the teacher’s time and schedule. At the meeting discuss and agree on the best way to communicate with each other. Options include email, face-to-face meetings, phone calls, and a communication notebook that goes back and forth with your child.

2.  Educate the teacher about your child

Credit: US Army RDECOM on Flickr
Just as every child is different so is every child with special needs. Autism, ADHD and other disorders affect children differently.  Therefore, if your child has autism, explain her needs to her teacher, as they may be different from other students with autism. Put together a one-page fact sheet about your child that includes:

  • Diagnosis
  • Strengths
  • Weaknesses
  • Past or potential classroom problems and possible solutions
  • Triggers for meltdowns and tantrums
  • Calming methods
  • Learning style
  • Your biggest concerns

3.  Be prepared for parent-teacher meetings

Your chances of having a productive parent teacher meeting improve if you spend time preparing for the meeting. View your child’s teacher as your ally – you both want your child to get the most out of school. 

Credit: NWABR on Flickr
Make a list of the questions and issues you want to discuss at the meeting and bring it with you. If you are concerned about a particular aspect of your child’s education, bring or write down examples.  For example, if you think your child may have a problem with her handwriting, bring a few pages of her handwriting with you.

Make sure you listen to the points made by your child’s teachers. Take notes at the meeting or write them down immediately afterward when the information is fresh in your mind.  Keep your notes in your child’s file. If you told the teacher you would do something, put a reminder in your phone or diary. If your child’s teacher said he would do something specific, set a date in your diary to check and see if it was done.

4.  Get and stay involved with your child’s class

Credit: USAG - Humphreys on Flickr
Many schools allow parents to help in the classroom or with other class activities. If you can, volunteering in the classroom is a great way for you to learn more about your child’s teacher. If you are unable to help in the classroom, ask your child’s teacher if there is anything you can do at home to help. Here are some ideas:

  • Source donations of equipment and/or money for classroom or school supplies
  • Type or proofread handouts given out to students or parents
  • Recruit other parents for school projects such as plays, science fairs, spelling bees, and art exhibits
  • Coach school sports
  • Prepare materials for class projects
  • Develop or maintain a website for the class or school
  • Contact local news media with school updates
  • Organize disability awareness day for class or school

Special Needs News: Dyslexic Spies, Low Iron link to Autism & ADHD Kids Treated with Drugs Not Therapy - 23 September 2014

Taking Iron During Pregnancy Lowers Autism Risk

Women, over 35, who have low iron intake during pregnancy, are five times more likely to have a child with autism, according to research from the UC Davis Mind Institute.  This increased risk also applied to women with a metabolic disorder such as obesity, hypertension or diabetes.

“Iron deficiency, and its resultant anemia, is the most common nutrient deficiency, especially during pregnancy, affecting 40 to 50 percent of women and their infants,” researcher, Rebecca J Schmidt said. “Iron is crucial to early brain development, contributing to neurotransmitter production, myelination and immune function. All three of these pathways have been associated with autism."

Schmidt noted that more research in this area is needed.  In the meantime, she advises women to follow their doctors' recommendations.

The study, “Maternal intake of supplemental iron and risk for autism spectrum disorders,” is published online in the American Journal of Epidemiology.

Credit:  Unfolded on Flickr

Most US Kids with ADHD Get

Medication as Their Only 


Only 25 percent of US children with Attention Deficit/Hyperactivity Disorder (ADHD) are treated with therapy as well as medication, reports a study by the RAND Corporation.  The number of children receiving both psychotherapy and medication to treat ADHD is even lower in some parts of the US.

Although ADHD is managed with medication alone, therapy can improve symptoms and even cut the amount of medication needed by children.

“Treatment of ADHD in children generates lots of controversy, primarily because of potential for overuse and abuse of stimulant medications,” said Dr. Walid F. Gellad, the study's lead author. “We wanted to find out among those who receive ADHD medications, how many also receive billed psychotherapy services? The answer is few, but it actually depends on where you live.”

The study, "Geographic Variation in Receipt of Psychotherapy in Children Receiving Attention-Deficit/Hyperactivity Disorder Medications," is published in JAMA Pediatrics.

People with Dyslexia, Dyspraxia Find Jobs as Spies

GCHQ by UK Ministry of Defence
Britain's intelligence agency employs over 100 people with dyslexia and dyspraxia because of their ability to "process and analyze complex data in a reasoned and analytical manner." Britain’s Government Communication’s Headquarters (GCHQ) even has a support group for workers with dyslexia and dyspraxia

The chair of this group, Matt, told the Sunday Times, "My reading might be slower than some individuals and maybe my spelling is appalling, and my handwriting definitely is... but if you look at the positive side, my 3D spacial-perception awareness and creativity is in the top 1 percent of my peer group.” He explained that workers in this neuro diverse group have "spiky skills" profiles - poor skills in some areas but superior skills in other areas.   


Mothers of children with autism less likely to have taken iron supplements during pregnancy

Type of Therapy Kids Receive for ADHD Depends on Where They Live

Dyslexic spies: GCHQ’s secret strategy to tackle terrorism and espionage

Youth Work Ireland’s Consensus Conference 2014

Venue: Dublin Castle Conference Centre
Date: Saturday 11th October 2014

This national event is open to anyone involved in youth clubs in Ireland.

The theme of our Conference this year is the Youth Club and the important part youth clubs play in the lives of young people in Ireland today. We will also look at the policy related issues in regards to the delivery of youth work through voluntary led youth clubs.
By far the vast majority of young people in Ireland who engage in youth work do so through parish or community based voluntary youth clubs. This conference will feature inputs from young people, volunteers, staff and key policy makers that will provide evidence that youth clubs do serious and challenging work in a fun way – work which has a transformative positive influence in local communities in both the rural and urban context.  A feature of this discussion will be the particular value of voluntary youth work in local communities and in the context of an Integrated Youth Service Model.
An important feature this year will be the activity based workshops that will focus on issues identified by club support workers, volunteers and young people as being those they face in their clubs every week. The workshops will be delivered in a fun way with expert facilitators who will equip participants with real and worthwhile skills they can bring back to their club.

Speakers will include

Minister for Children and Youth Affairs, Dr. James Reilly
Prof. Michael Fitzgerald, Henry Marsh Professor of Child and Adolescent Psychiatry, Trinity College Dublin
Seamus Boland, Chief Executive Officer, Irish Rural Link
Jim Breslin, First Secretary General of the Department of Children & Youth Affairs
Janet Gaynor, Acting Function Manager with Health Promotion and Improvement, HSE West
Cormac Clancy, Principle Officer, Department of the Environment, Community and Local Government
Lorraine Thompson, Regional Director, Donegal Youth Service
Dr. John Bamber, Project Specialist, Centre for Effective Services
Lisa Marie Sheehy, Limerick City & County Council

Who should attend?

This conference will provide valuable policy and practice insights for practitioners, managers and policy makers working in the areas of youth work. The day will feature inputs from senior policy makers from Government Departments directly related to voluntary youth work, communities and work with young people.
The workshops will provide tips, skills and real knowledge for anyone working with young people in local settings. The day will offer an opportunity for people to informally network and share their own learning with volunteers, staff and policy makers involved in youth clubs in Ireland.
Those who should attend: Youth officers, youth workers, social workers, Local Community Development Committee members, Children Services Committee members, County Managers, community & voluntary organisation representatives, academic and policy makers, young people, youth leaders and volunteers.

Conference Cost €80

Irish Autism Action - Autism Expo 2014

This event is free to attend. Please register on iRegister, here.

More information is available from Irish Autism Action.