Salt In The Wound - Misconceptions About ASD

For those of us with children along the autism spectrum, it is often a difficult task to navigate our local educational system and other sectors of society just to ensure that our children receive the support that they need as well as to make the most of the unique gifts and talents that they also possess.

Sometimes, it seems that one of the biggest challenges that we face is that we spend so much time and energy educating everyone about what autism spectrum disorders are and are not.

Whether it's the teachers, caregivers, well-meaning family members and friends, or society as a whole, we each have our own private mission, our own private battle, to educate and to explain. We do this so that our children and their peers can live in a better, more informed, more understanding world that supports each member in a positive, nurturing manner.

Dealing with the misinformation and negative stereotypes surrounding ASD is very frustrating, time consuming and draining, but it is a battle that we each must fight so that our children can receive the support that they need.

As a result, many groups have sprung up to help parents and others who have children and loved ones with a diagnosis of ASD. As expected, most of these groups have been very helpful and supportive to those of us who have loved ones with ASD. Most ASD groups are usually founded and composed of people just like us. It's comforting to have someone to listen to our frustrations, hopes, fears and dreams when that person knows how we feel because they've "been there."

So, one would naturally expect and assume that having "been" there themselves, all of these ASD support groups would automatically portray and represent children and grown-ups with ASD in a fair, balanced and positive light. After all, while having ASD has its unique challenges, it's not like having a terminal illness or a contagious, deadly disease. Children and adults with ASD are like others in the fact that they each have individual talents, individual strengths, individual gifts - they just need some specialised attention and assistance to make full use of them.

So, when those who are ignorant go out of their way to portray those with ASD in a highly negative light, as though having ASD is some great curse akin to having the bubonic plague or leprosy in the Dark Ages, it is very hurtful. What's even worse is when these hurtful remarks come from individuals or groups that should know better. It's akin to rubbing salt in a wound when those words come from "one of our own."

Recently, in an open letter written by Susanne Wright of Autism Speaks, Wright referred to  the "grave illness" of autism, and blamed a host of ills on ASD, saying it causes families to "split up," "go broke," and that families with those "afflicted" aren't really "living." Since this group claims to support ASD individuals and families, wouldn't you expect that she should know?

Of course, other ASD groups have come forward to condemn Wright's words. Some, even go so far as to suggest that those of us who have a moral compass should call for a boycott of the supporters of Autism Speaks. I am not going to tell others how to spend their money, but at the very least, as someone who has "been there," I will add my voice to others who are speaking out for our children and other loved ones with ASD. I encourage you to do the same. Living with someone with ASD has its challenges, certainly, but it also has its blessings. Blessings that are so perfect and pure that I would not trade my children, or my journey.

Support The Autism Awareness Campaign!

Whether or not you and your family have been touched by autism we ask you to consider supporting the Autism Awareness Campaign which is hoping to be noticed by the politicians during this year’s election campaign.

Back in March 2013, autism expert Dr Tony Attwood said ''A child diagnosed with apparently mild autism may have challenges that are profound to them.  If they are offered little or no support, there potentially could be tragic consequences.''

In May 2013, DSM-5 was introduced and the definitions of autism, aspergers and many other mental disorder conditions changed.  Now the number of people who will qualify as having ASD, and therefore qualifying for funding, has changed, too.  Some estimates suggest only 60% of people currently diagnosed with autism would meet the DSM-5 definition.

This election, speak up for all Australians with autism.  In all of the promises and spin over the next few weeks, it is crucial for them to make their voice heard.  We need to remind our politicians that 1 in 100 needs to be funded and it needs to be now!  Find out about their new campaign and how you can get involved.

Let's help them make their message heard by visiting the Autism Awareness website and spreading the word.  Anything you can do to bring this issue to the attention of our politicians and the policy-formulating advisors would be a great help.

New Free Online Video On Early Autism Recognition

Autism researchers at the Kennedy Krieger Institute in the USA have announced the release of a free online video tutorial on early autism recognition.

  

The goal of the tutorial is to “improve recognition of the early signs of autism spectrum disorders (ASD) in one-year-olds among pediatricians, parents and early intervention providers.”

The video is available on YouTube so that any parent can access the information but it is designed to educate doctors, too.  The signs of autism can be very difficult to spot, even for professionals, until the child is around two years old.  This clip shows what to look for – the warning signs – in children as young as one.

Remember that every child is different and just because your child shows one of these behaviours it does not mean that he or she is on the autism spectrum.

 “The nine-minute tutorial consists of six video clips comparing toddlers who show no signs of ASD to toddlers who show early signs of ASD.  Each video is presented with a voice-over explaining how the specific behaviors exhibited by the child, as they occur on screen, are either suggestive of ASD or typical child development.”

Here is the video clip.  I hope it’s helpful for you.  I’d love you to leave me a comment telling me what your thoughts are.

Celebrating World Autism Month

Autism Spectrum Disorder (ASD) affects every family in some way.  Most people are aware of someone who has an ASD and therefore they are aware of the strain these disorders can place on parents, carers and families in general.

The month of April is internationally recognised as Autism Awareness Month and each year the awareness grows thanks to many varied organisations and supporters.

One of the very worthy supporters is Australia’s Camp Autism Inc.  Camp Autism Inc is run by a group of volunteer parents who have children with an ASD.  These parents have recognised how valuable it can be for families to enjoy quality time as a “normal” family without facing the stigmas that society places on ASD children and their families.

Through their amazing efforts many ASD families have been able to attend Camp Autism Inc and not only enjoy a family holiday, but also meet other ASD families and make new friends along the way.  The chance for the family to enjoy family time without any fear of judgment is one that provides lasting and treasured memories for these families.

Without the support of businesses and volunteers, these dreams would not be able to be realised.

Here at The Toy Bug we are giving our full support to this fantastic cause and throughout the month of April, we will be donating 10% of all sales towards Camp Autism Inc to support their pursuit of creating a special needs holiday venue for Australian families.

Extreme Love – Autism

Earlier this week I highlighted on The Toy Bug Facebook page the program recently shown on ABC 2 that was made by Louis Theroux called Extreme Love – Autism.  The program is about some of the challenging circumstances that are faced by parents with children with an autism spectrum disorder as they grow older.

In particular they focus on a mother who has a 13 year old son who can have explosive tantrums, a 19 year old who is about to leave school as well as a 20 year old who is severely autistic, sets the house on fire and attacks his mother.

In addition, the program also visits an innovative school in the USA to find out how specialised intervention can help.

The program is powerful viewing whether you have an autistic child or not.  I encourage everyone to watch and learn.

Photos With Santa

Are you interested in your child having their photo taken with Santa?  Highpoint Shopping Centre in Melbourne as part of their Sensitive Santa initiative has implemented special arrangements for children with an autism spectrum disorder (ASD).

You can book a time so you, your family and Santa can have a photograph taken that is in a gentle and safe environment.  There are plenty of times available as this initiative runs from 3 to 12 December so call (03) 9318 1699 to make a booking at Highpoint Shopping Centre or follow this Santa Photo link to our Facebook page for more details.

Highpoint Shopping Centre is to be congratulated for this initiative and hopefully other shopping centres around the country also implement this program.  To try and continue to raise the awareness in the community Amaze (Autism Victoria) have an information pack that they can send out to you so you can take to your local shopping centre.  Therefore, whether you are a parent, carer, friend or a supporter follow the link so you can receive the information pack.

Having the special picture taken with Santa can have lasting memories and as our kids seem to grow up so fast these days, having photos are always great to have when reminiscing about their younger years.

A Film About Autism

 

To help with raising the awareness, acceptance and understanding of people with autism spectrum disorders (ASD), Autism Awareness Australia has created a short film titled “What are you doing?”.

This purpose of this film is to teach school age children about ASD and help them to better understand and accept their peers who may have ASD at their school or in the community.  The film is narrated by Tom Gleisner and Michael Whelan is the author who has also written “The Other Country”.

The film includes interviews with family and friends of children with ASD and features a strong message on inclusion and understanding of ASD.  Animations are also used to help explain the message as well as the use of some beautiful imagery.

Over 10,000 copies of this film have been distributed to every school across Australia including teaching materials to assist the school and the teachers as they educate their students.

You can also purchase you own copy of the DVD for $20 plus postage by clicking on the “What are you doing?” link.

Putting Together A Sensory Box

The next time you give a gift consider the idea of the sensory box.  This can be suitable for any child and combines a range of different toys that relate to the different senses.

Consider the Flashing Spinning Top that comes with bright coloured lights that change patterns when spinning.  Even the Flashing Squishy Pig is fun as it has interesting textures to touch and feel, it lights up when squeezed and makes a great fidget toy.

The Rainmaker makes a gentle sound as the coloured beads cascade down the different layers and also links movement with sound and allows the little ones the opportunity to explore the different rhythms.  The Musical Triangle is another great idea that allows the development of rhythms as well as coordination.  

The Zebra Teething Bling is a safe alternate comforter for teething babies or children requiring oral input.  In addition, the Fruit Bubbles are ideal for identifying smells, as they come in different scents.  The watermelon, strawberry and grape flavous can be smelt when the bubbles pop.

The Hopper Ball is perfect for developing coordinatin and balance as well as being a great exercise that can help to strengthen leg muscles.  The Scrunch Ball will also help to develop coordination as it is very squishy, and even huggable which makes it very catchable plus also light and safe for indoor play.

These are just some examples of the type of toys you can use to build a sensory box but there are so many more options.  Have a look through the Sensory Toys section to get more creative ideas for your sensory box. 

Diet And Autism

There are numerous interventions parents can undertake with a child who has autism and diet is one area that is particularly important. There is anecdotal evidence from parents that certain diets have resulted in improvement with people with an autism spectrum disorder (ASD). Scientific research is not as definitive as some reviews and reports support this notion while others don’t.

There is some great information in the article titled Diet and autistic spectrum disorder and we’ve extracted some suggestions here for you.

• Gluten free and casein free: Gluten is a protein contained in many types of breads, pastas, biscuits and breakfast cereals. Casein is a protein in cow’s milk that is contained in cheese, butter, ice cream, yogurt and milk chocolate biscuits. It is suggested that people with ASD have an abnormally leaky gut that creates an intolerance to these proteins which affects mental function and behaviour.

• Food additives: People with ASD are intolerant to many food additives such as colourings, flavour enhancers, artificial sweeteners and preservatives as they can affect their behaviour.

• Phenolic compounds and salicylates: The suggestion is that foods such as cheese, tomatoes, oranges, bananas and chocolate contain enzymes that some people lack that are needed to break down the compounds in these foods and as a result affect the symptoms of people with ASD.

• Yeast free: Eating less foods such as natural and refined sugars, breads, vinegar, cheese, soy sauce, alcohol, coffee and processed meats reduces the growth of yeasts in the gut and avoids the leaky gut scenario that is similar with the gluten free and casein free diets.

Again, as noted at the start, the scientific research is not definitive on this issue and importantly working with your doctor or a dietician from a community health service can provide more information and support in this important area.

April Is World Autism Awareness Month

With April being World Autism Awareness Month it provides an opportunity to discuss, learn and highlight issues with Autism Spectrum Disorders (ASDs). This can result in a greater appreciation and understanding of ways we can assist children and adults who suffer from an ASD to improve and lead a more meaningful life.

With one in 100 people estimated to have an ASD, the awareness month also provides an excellent opportunity for people who don’t suffer from any ASDs to be made more aware of this neurological condition.

ASDs can affect interpersonal skills, communications, motor skills, concentration as well as a number of other developmental conditions and can relate to people with Asperger’s syndrome and high functioning autism. It has been the raising of the awareness that has led to many of these conditions being recognised in the last 10 to 15 years where previously they may have been misdiagnosed. The importance of this is that with early intervention, better support and understanding occurs to assist with managing the ASD.

As part of the World Autism Awareness Month, in 2007 the United Nations General Assembly declared 2 April as World Autism Awareness Day in perpetuity. Autism organisations around the world use this day to promote fundraising and awareness events. This also includes the Light It Up Blue campaign and this year thousands of building and landmarks in 45 countries and over 600 cities were coloured by blue lights.

The other important issue with World Autism Awareness Month is that it provides an opportunity to value the role of autistic people in the world, how they can make a positive contribution and that they can be proud of themselves.

As part of our involvement with World Autism Awareness Month we would like to encourage you to share your thoughts and stories on our Facebook page.

Developmental Coordination Disorder – Heard Of It?

A new study has shown that children that may have been diagnosed with ADHD or other familiar disorders may in fact be suffering from developmental coordination disorder (DCD).

ADHD can often be diagnosed when children have trouble with routine tasks such as getting dressed, playing certain types of games, drawing or even using a computer but in fact they could be suffering from DCD. The study undertaken by Professor Sara Rosenblum identified that in quite a few cases the diagnosis does not occur early enough and is incorrect. This can result in frustration and a sense of disability that leads to a decline that requires psychological therapy.

DCD can be expressed through the “inability to control a process of carrying out a particular motor task, consolidate it in memory and repeat automatically”. Examples of this may include tying laces, riding a bicycle, closing buttons, and so on. Where most people do these things automatically, people with DCD will find them difficult to do. As adults, they may have trouble doing things such as estimating distance and speed, making it difficult to learn to drive or ride a bicycle.

It can be quite embarrassing for children if they can’t do simple routine things. It is even worse for adults who often have to find ways to cover up their lack of skill.

A simple and non-invasive test of writing tasks has been developed to identify DCD in children. Children with DCD have no physiological or intellectual deformities, and in many cases, they have above average intelligence. As they are not able to complete tasks that require coordination between motor, sensory and cognitive functions, the use of occupational therapy provides the necessary treatment and guidance to assist them.

ASD And The Drama Of The Airport

Airports are huge, noisy, brightly lit areas of CHAOS!

They can send anyone over the edge, especially a child on the spectrum.

As with all new environments, it is important your child feels safe. Bring activities they enjoy to keep them occupied, familiar foods and anything that keeps them calm and helps them to feel secure. This is for both during your time at the airport and on the flight itself.

It’s also important they are dressed comfortably and it's really helpful if you dress your child in brightly coloured clothes. It makes them much easier to spot in crowds, should they wander off!

Set them up with activities whilst you’re waiting in lines as well as waiting for the flight to take off.

In preparing your child for the airport, the use of social stories is fabulous and helps your child to understand and anticipate what is coming. Ideally, and if it's an option, try a trip or two to the airport itself, so they are more familiar with the environment.

Your best strategy, however, is to ask for help. If you have someone to be a second pair of hands and help keep your child entertained, then that’s what you want to aim for.

However, that is not always an option, so don’t be scared to ask the airline staff for help. Explain your child has special needs, and that they don’t do well with lining up. Being open and upfront will ensure your needs are respected, and it will also help the airline staff to help you.

If you can afford it, avoid the low-cost airlines as they often don’t have the resources to help. That is, they may be slightly understaffed and frazzled and not able to give you the assistance you require.

Finally, be aware of the strong smells and loud noises of the airport, as well as the visuals; strong, bright lights, and loads of people!

Travelling on an airplane should essentially be fun - however as with anything, the more familiar they are with an environment the better.

Dr Sheldon Cooper – Big Bang and Asperger’s

It’s an ongoing question. Is Dr Sheldon Cooper from television's The Big Bang Theory on the Autism spectrum or isn’t he? While the writers and creators of the show say that they didn’t write the character as having Asperger’s Syndrome, Sheldon exhibits lots of classic symptoms of both Asperger’s and OCD.

Just consider his love of routine.

• He sits in the same place and won’t sit anywhere else
• He has a set schedule for toilet and bathroom use
• He has a set schedule for weeknight activities
• He orders the same food every time and won’t accept variations
• He doesn’t understand emotion in others.
• He can only accept logical and fact
• He is socially awkward
• Limited interests
• Brilliant in certain areas

I don’t think the show will ever classify his character in any way. As Sheldon himself says, “My Mother had me tested” and nothing came of it.

What I love about The Big Bang Theory and Sheldon is that it takes away some of the mystery for people who don’t really understand ASD. It shows a real human who is coping in the real world, despite his own set of peculiarities. It shows a man who is capable of loving in his own way and who is willing to try to do things the way others do them if it’s really necessary.

Look at the way he looked after the character of Penny when she hurt her shoulder. He might have struggled with the cuddling but he managed a “there, there.” He also managed to sing his own special song “Soft Kitty” to help her settle to sleep.

Does Dr Sheldon Cooper have Asperger’s Syndrome? Who cares? He’s loyal and he’s lovable and it doesn’t really matter how he’s “classified”, does it?

Winter Foods and ASD

Winter brings with it that wonderful feeling of rugging up and enjoying delicious hearty meals that we don’t crave in the warmer months. But it can also bring it with a number of challenges for parents with fussy mouths to feed, particularly those with ASD and the often associated food sensitivities.

There are ways to make winter food tasty and healthy even for the most discerning diner. Being involved in the food preparation stage can help to create excitement for new foods. Winter meals are particularly good for this as they usually involve simple preparation followed by time in the oven. From mixing and measuring to getting things out and putting them away again, your little one may be more motivated to sample and enjoy something they’ve had an active part in creating.

If it comes down to the food itself, try using the meals you know they love as a base concept and putting your own winter spin on it. Homemade meatballs with chunky salsa, delicious soups, pita bread pizzas with sweet potato or odd shaped pasta with round cut vegetables. Fun variations that can allow for the cheeky addition of easily disguisable vegetables. Then there are simple yummy sauces which can be made using natural ingredients matched to the flavours you know your child enjoys (like capsicum jam which tastes sweet like shop bought tomato sauce).

Fortunately for sufferers of food allergies (and their parents), a rise in awareness in recent years has seen the emergence of an endless number of ‘free from’ products available for those seeking out alternatives. You can now get almost any product gluten free from the local supermarket with an increasing number of dairy and sugar free products also available. Plan whatever type of meal it is you want to tempt your fussy one with and then replace the usual ingredients for alternatives like gluten free bread and pasta.

Winter is the perfect opportunity to be able to recreate simple dishes and slip in extra vegetables and other nutritious additions. The use of alternative and natural wholesome ingredients, plus a touch of creativity, can help you to make fun, tasty and healthy food for your fussy eater this winter.