Orginally Posted on Madam Bipolar for Autism Awareness Month. Yesterday at speech therapy talking about my daughters progress made me think of this post and I knew it was time to share here … You can find the orginal post here.
Yesterday when I was picking up my daughter from daycare I saw a little boy in the playground that when he saw his mother arrive gave her the biggest smile, ran over to her and yelled ‘I love you’. I could not help myself. It just made my eyes well up. They are only just three little words but three words most parents with children on the autism spectrum want more than anything to hear – I love you.
We can hear them say it with their actions and believe it with all our soul. But we may never hear it spoken from the lips of our children.
Some children can’t speak. Some may never. Some may communicate needs and desires with aids like pictures. And others are able to babble about topics of interest but find it difficult to talk about anything else.
My son speaks very little. He tends to talk under his breath and come out of words of things that are of interest like names of his favourite
Thomas Trains or observations like car, wash (for anything related to water including rain, baths, showers, pools). Sometimes he will say ‘Mum’ and ‘Dadda’. Occasionally … Very Occasionally … you will get a sentence. Just before Christmas the said “I want water” and during the holidays he said just before bed “I want watch Thomas”. But these are rare and far between. He communicates primarily using the Picture Exchange Communication System (PECs). With this he can communicate his wants and needs. And for this we are lucky.
There has never once been the words ‘I love you’ or anything close to it.
But even though he doesn’t share his love and affection in other ways. I know I am very lucky because while he can not express himself with words he is a very affectionate little boy. And while he can not say the words he tells me in a hundred different ways. He tells me he loves me with his big bear hugs and beautiful big smiles. He tells me he loves me when he climbs onto my lap after breakfast to have a morning snuggle. But, yes I would still love to hear it. I would love to hear it and so much more.
In some ways I find it strange as I can (and often do) talk underwater and for hours. I love to talk but this basic and simple form of communication is the hardest thing in the world for my son to do. For me understanding this has been one of the hardest aspects of helping his with his autism as communication affects all aspects of his learning, behaviour and social interaction. And he is not alone. Recent figures from the CDC suggest that the rate of Autism is 1 in 88 (data) affecting almost 5 times more boys (1 in 54) than girls (1 in 252). Making it more prevalent than paediatric AIDS, Cancer and diabetes combined. And many of them share the same communications challenges as my son.
And while ‘I love you’ maybe three little words … but for me they symbolise awhole lot more. For me they represent the ability to communicate and the ability for people to share their lives and experiences with others. For me I think that this is a human right that needs to be protected. I believe that all people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. I agree with the the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.
Each person has the right to
- request desired objects, actions, events and people
- refuse undesired objects, actions, or events
- express personal preferences and feelings
- be offered choices and alternatives
- reject offered choices
- request and receive another person’s attention and interaction
- ask for and receive information about changes in routine and environment
- receive intervention to improve communication skills
- receive a response to any communication, whether or not the responder can fulfill the request
- have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
- have AAC and other AT devices that function properly at all times
- be in environments that promote one’s communication as a full partner with other people, including peers
- be spoken to with respect and courtesy
- be spoken to directly and not be spoken for or talked about in the third person while present
- have clear, meaningful and culturally and linguistically appropriate communications
They all sound pretty normal requirements … fairly basic. But even within Australia many people with Autism and disabilities that affect communication these rights are not recognised, respected, protected or upheld. I ask you for just a few minutes today to imagine if you are a parent to imagine what it would be like to have never heard your child’s voice, imagine not having heard ‘I love you’ and not knowing if you ever will or imagine if you, even for one day, could not communicate (completely no talking, writing, blogging etc). Imagine not being able to request basic needs and desires or refuse something. It is hard isn’t it. The world wouldn’t seem the same. And this is the reality of life for many people like my families like my own. But there is hope.
While there is no cure for Autism Early Intervention programs targeting the crucial early learning years can dramatically improve the live of children like my son, setting them on the path to mainstream education and eventual independence. To be effective the Commonwealth Government’s Best Practice Guidelines state that “A program needs to be of at least 20 hours per week over an extended period of at least two years”. This equates to 1000 hours per year for 2 years. Despite these guidelines only a handful of families can afford to access this amount of therapy. Currently the Helping Children with Autism package, Medicare and Health Insurance (and where you have all the extras and top cover) falls short of providing children with best practice early intervention. Based on our own experiences the funding and support we receive equates to less than 30% of direct therapy costs. I know I should not compare between medical conditions but this is falls way short of estimates for direct cost coverage for other medical conditions such as childhood cancers that cover above 85% of direct treatment costs. And the situation gets worse when you look at funding and supports for children that need additional assistance at primary school, secondary school and beyond. More needs to be done and today.
Maybe with more funding and assistance hearing those three little words will become the reality for more parents. For more information on Autism visit Autism Awareness and to find out about the great work being done to help children beyond early intervention visit my son’s school at Woodbury Autism Education and Research.