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.

Where To Go When You Need Help

Raising children can be difficult even in the best situation, as the regular passage of childhood often contains special stressors and other challenges. As parents who have children along the autism spectrum well know, childhood is a time of great change and development, which can be especially trying for their children and the family.

There are a number of community and government resources available throughout the country to help parents and caregivers receive the support that they need to help care for a child who has been diagnosed with a significant health issue or condition.

Whether you have a child on the autism spectrum or who has a learning disability, it is important that you know that there are several types of assistance available to you. Assistance is wide ranging and diverse and can include financial support to those with economic difficulties and social support from others who are going through a similar challenge.

The following are just a few of the many types of programs that are available.

My Time: has groups all across Australia that connect parents, grandparents and other carers so that they can support one another in their efforts to care for their children that suffer from a disease, disability or other serious health condition. Groups meet locally on a regular basis, and include a designated carer that will facilitate the children playing constructively while the parents and other primary carers have a chance to meet in person and share their stories, tips and advice for how to cope with the challenges that they face. This community resource is especially helpful to families with children along the autism spectrum.

Australian Government Support for Disability and Carers: the Australian government has several programs and resources for the parents and primary carers of children with serious diseases, disorders and disabilities. Support is wide ranging and includes anything from providing assistance with coping financially and mentally with the special challenges that carers face as they provide care and assistance to children with specific needs and challenges.

Specific Australian Government Support for Children Along the Autism Spectrum: is a great place to start your research if you are seeking help with caring for a child who is along the autism spectrum. This resource provides information and links to assistance that is available to families and other carers of children with autism spectrum disorders.

The Carer Adjustment Payment: provides information to parents and other carers that need financial assistance to care for their child who is under the age of 7 and also has a serious disease, disorder or disability.

State and Territory Carers Associations: provides information about resources available to carers throughout Australia, with links to contact information so that carers can receive local assistance and support.

If you are struggling with the care of your child, consider looking into these resources to ensure that you have all the help and assistance that you need.

Waiting For An Autism Diagnosis

Suddenly you are called in for a meeting with your child’s teacher, preschool teacher or day care. Perhaps you have always had an inkling or concern about certain behaviours in your child? If the word “autism” has been mentioned or crossed your mind, you will certainly be eager to get a diagnosis. But then you find out it is weeks or months before you can get an appointment for a professional assessment and diagnosis.

So what can you do while you are waiting for a diagnosis?

At Home Play Therapy You Can Do Yourself

Early intervention is essential in any diagnosis of autism. However there are some things you can start with at home that will benefit your child, regardless of whether they get diagnosed with autism or not. Referred to as “developmental therapies” they can include floor time and play therapy. Basically they involve intensive parent-child interaction that feels a lot like playing.

Find Parent Support Groups And Information

Either in your local area or online, parent support groups can provide advice, resources, information and most importantly, a listening ear.

There are also some really great websites to have a look at:

www.raisingchildren.net.au
www.earlydays.net.au
www.autismspectrum.org.au

Your Reaction

Waiting for a diagnosis can be a very difficult time. It might feel like you are in ‘limbo’ until you get the results back. You could experience a range of feelings such as sadness, grief, relief, shock, denial or anger. It is important to work through your emotions and remember, a diagnosis won’t change your child, but it will open up services and a direction so you can begin to help them.