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.

Get Organised

Life can be stressful, particularly when you have children with ASD. It is easy to feel overwhelmed by the things you don’t know or don’t understand or because you simply feel like you have little control over your child. Their behaviour can be challenging and this in itself can be frustrating.

One way to overcome much of the stress we face (unfortunately some levels of stress will always be present) is to get organised.

Organisation can be a very effective tool when it comes to maintaining or decreasing stress in your life. 

Creating routines are a big help, as is using a resource such as The Carer Record Folder.

Especially designed for carers and particularly helpful for those managing a child with a disability or additional needs, the Carer Record Folder was created to simplify the process of attending various appointments by filing all important paperwork and information in one easily accessible folder. No more frantic searching for paperwork - just pick up the folder and go.

The folder is broken down into specific categories for ease:  Personal, Medical, Assessments, Therapies, Correspondence, Education, Centrelink, Funding/Concessions, Receipts/Statements and Information/Notes. It also contains a variety of forms to record all types of information such as Medicare information, contacts, medications, hospital visits and more and comes with a CD of the forms to enable you to complete forms electronically and print extra copies off as and when you need them.

For the price of $50, the Carer Record Folder will bring great peace of mind when it comes to managing your appointments and paperwork.  Preparing for situations that can cause stress can definitely be a big help when it comes to managing your stress.

There will always be ups and downs when you live with a child with ASD, you just have to identify ways to ensure that certain aspects of your life are still within your control.

Movement And Motion For Children With Autism

Recent research in the US has confirmed what many parents have observed for years, that motion, cause and effect, repetitive and movement type toys and games are often preferred by children with autism spectrum disorder (ASD).

When we think of sensory feedback in a ‘neurotypical’ world, the senses of sight, smell, touch, taste, and hearing are what spring to mind.  When it comes to children with autism spectrum disorder however, we need to consider the lesser known senses, the vestibular sense that helps us keep our balance and know where we are in space, and proprioception which has to do with the way our joints respond to movement and pressure.  This explains why adults and children with ASD as well as those without, enjoy such things as deep tissue massage and can be calmed by weighted blankets and the application of pressure.

Games and activities that offer a broad range of sensory feedback were preferred over all other types of play in the hands-on, museum based study, imaginative play being the least attractive to children with ASD.

Children with ASD often find repetition and sensory feedback soothing, and if they themselves cannot be moving, they enjoy watching moving objects.  Encouraging these kinds of activities in play, and by introducing toys that play to these strengths can encourage development and interaction as well as being a source of comfort.

Active play toys such as the See Saw and the Ball Chair are great for kids with energy to burn, who respond well to physical stimulation.  These toys provide different levels of feedback via sound, repetition and movement.

More passive children who prefer less active stimulation, or need some downtime, might enjoy the LED Mini Fan, which not only gives visual feedback via the lights and movement but also the feeling of air and cooling.  The Soothing Liquid Timer is a visual and calming toy that also provides a feeling of time and movement and time for self regulating emotions or actions for a child needing boundaries.

The Expandable Ball is a tactile toy that feeds the need for repetition and movement. It is a portable toy which does not require batteries or lots of space, and is a good option for a child’s bag.

One size never fits all in sensory play but at The Toy Bug we pride ourselves on researching and sourcing new products to help children with their development through play, visual stimulation, motion and movement.

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.