For April Autism Awareness/Acceptance Month, I am endeavouring to answer some questions to help those who do not have much experience with Autism understand more what it is and how it affects lives. To do this I've enlisted the help of some friends through my Facebook page and a couple of support groups I am part of. Today, I am bringing some answers from parents of Autistic kids to the question "As a parent of a child with ASD, what is the greatest need you have?"
As you can imagine, the answers varied. Some of the variations I think were representative of the age of the children people are caring for. Some of the variations would have been due to the severity of the children's symptoms, and the amount of time that has passed since diagnosis. And some of it is just because Autism is a spectrum, and each of us who live with it experience it differently (Rob from Lost and Tired speaks well on this here). The differences in experience are why I do my best to articulate that what I write about are my experiences, and may not be shared by others. They are also the reason why I asked other parents of Autistic kids to help me answer this question. I have edited and paraphrased parts of their responses a little simply for clarity of reading in this context.
Q: "As a parent of a child with ASD, what is the greatest need you have?"
A: I need more services aimed at the 6-10 year old age group. There is a lego group that meets near me, but that is the only service I can see in our area. I also need better distribution of funding - our kids don't suddenly stop being autistic when they turn 7 (as nice as that would be). For them to maintain the level they achieved with early intervention they still need regular intervention of some description.
#Clarifying Note# Currently in New South Wales, Australia, where I live, children are eligible to receiving funding from the state government to help cover the cost of therapy. This is a great step forward for us, and the money available currently pays for G's Occupational Therapy. However, to get the funding your child must be diagnosed before they turn 7, and can only be used at places that are registered with the funding body. The government acknowledges that for the best benefit to be gained, a child needs 20 hours a week of various therapies consistently through their early years. The funding the government provides is enough to pay for about 1 hour of therapy for a maximum of 2 years. It is this that the person who answered above refers to. We currently drive an hour to get to the OT we can use this funding with, and once the money is used up, we will not be able to afford to pay for it ourselves.
A: My family to finally accept my son for who he is, and perhaps offer just a little support?
A: For people not to judge him, there's more to the story than what you see.
A: Extra help in the classroom for our twins is our greatest need. There is school funding used for our boys but it's currently being used in the playground with none left for use in the classroom (one boy is wandering so the need to keep him safe overides the time available for classroom help). As most parents would agree there is only a limited number of hours given to each child but we always need more!!
#Clarifying Note# Again, location specific! Our schools in NSW receive a certain amount of "extra" funding to assist children with special needs. I am currently in the process of organising this for G for when she goes to school. I have to prove that she needs a certain number of hours per week of extra assistance, which will be provided in the form of a teachers aide. I have been through this process for L too. He currently receives 10 hours a fortnight of teacher aide assistance. His school manages this time well, and I have no complaints. Wish me luck with G's funding though, as I believe she will need a full time aide, and that will be very difficult to prove in the way the school system bureaucracy will respond to.
A: My greatest need is to get my son to not be ashamed of his diagnosis and believe in himself.
A: My greatest need is experienced individuals to work with my child.
A: The greatest need I have is to have time to myself, to recharge my batteries, so to speak.
My heartfelt thanks go out to (in random order) Matthew, Kay, Jennifer, Michelle, Carrie, Kerry and Melanie for taking the time to respond to this question.
If you read this and feel you want to add to it, please leave a comment below. What is YOUR greatest need as the parent of an Autistic child?
And my greatest need? Honestly? I don't know. It changes all the time! Sometimes it is chocolate, sometimes it is a massage (seriously- my shoulders and neck hurt some days!), some times it is more therapies, sometimes it is teachers who understand ASD a bit better, sometimes it is money to pay for a psychologist visit for myself or one of the kids. I agree with all the things above, and I have some others too. Right now, with L settled pretty well in high school and my NT kids doing pretty well, my greatest need is support in getting little G ready for school. And I actually have a fair bit of support for that already. Maybe my greatest need is energy to do all the things I need to do with the help of the people who are supporting G & I through the process. And the patience and flexibility to jump through the bureaucratic hoops. And I always need wisdom. Bucketfuls of wisdom.