Submission
No 124
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Name: Sara Cartwright
Date Received: 22 April 2016
Submission S124 Received 22/04/2016
Family and Community Development Committee
From: Sara Cartwright
Sent: Friday, 22 April 2016 7:52 PM
To: FCDC
Subject: Submission for the government enquiry into Autism services
To whom it may concern,
Right now, as I type this email, my house is filled with screaming, crying, tantrums and and the sounds of breaking toys. This is a regular occurrence. My 13 year old son has looked at my 6 year old daughter in the wrong way and then he wouldn’t sit up so that she could punch him in the back. So her way to cope with this is to throw herself on the ground, then stomp around the house screaming and throwing anything that gets in her way. Next she will grab some clothes (probably a jumper, a pair of knickers and her favorite shoes, because I always tell her to put her shoes on before she goes out, and make sure she has clean knickers on and her chest is warm if it’s cold out), a doll, and her weighted blanket, because that makes her feel better. Then she will storm out of the door, slam it behind her, then run for the gate.
We live on a road, where cars travel at 100km/h. I currently have a broken ankle. I’m sure you can imagine how much fun it is for me to chase her and try and catch her before she reaches the road.
Tegan had an okay day today at school. She attempted to read some stories (she repeated prep last year and is thankfully in grade 1 this year, although still struggling), practiced writing her words, and the class had athletics training. They had a replacement teacher today, so that made things a little bit difficult for her because it messed up her routine, but it’s okay ‐ she coped. Or at least she pretended to. The literacy stuff is all on white paper, and under flourescent lights. Her teacher keeps forgetting that she needs blue paper and the lights to be dimmed to keep her in check. The contrast of the white paper and the plethora of colors that come out of a flourescent light is too much for her poor little brain to cope with. She did okay in the classroom in the morning, and sat quietly because she knows she has to do that. She fidgeted a little bit, but then got told off for doing that. She doesn’t like getting in trouble. Then she started making noises, because she does that sometimes when she’s concentrating. She got in trouble for that, too. See, the replacement teacher doesn’t know about Tegan’s needs.
Tegan knows how she is supposed to behave ‐ she’s a very good actress. She spends all day trying her best to please everybody. Sometimes she slips up at recess and lunch time, and she might hurt somebody. She feels extremely bad about it afterwards, but at the time she can’t control it.
By the time she gets home, her stress hormones are in overdrive, and she loses control. There’s no way we can stop the inevitable meltdown.
I seem to be the only person who can calm her ‐ she sleeps next to me every. single. night. Not by choice. This is the only way she can sleep. We’ve tried medication. We’ve tried diet change. We’ve tried controlled crying (that made her worse!) and sleep school (she was so worried that I wouldn’t be there when she woke up that she didn’t sleep at all, then when the program was finished she wouldn’t let go of me. I will NEVER do that to her again). She has had dummies, chew necklaces and other bibs and bobs to put her in mouth, because she is very tactile and likes to have things in her mouth.
Two days ago, I tried to calm her during a meltdown. She threw herself backwards and out of my arms. I tore another ligament in my already broken ankle while I was trying to stop her from hurting herself. I don’t care. Her safety is more important than mine.
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Tegan is only 6 years old, and she can not cope with every day life. She is autistic. She has only recently been diagnosed (she turns 7 in a few days) because it wasn’t until she started school that it became apparent that it wasn’t just ‘Terrible Twos’ (and threes and fours and fives) that was causing the behaviour. She was already 6 when the diagnosis occured, so we have missed out on a great deal of government funding which could help her drastically ‐ psychologist, occupational therapists, speech pathologists ‐ these things are all things that she needs, regardless of when she was diagnosed. So why is it that the day she turns 6, the government believes that she no longer needs these things? Weighted blankets, tactile toys and resources, training for her father and I… all of these things could have been funded by the government grant if we had gotten her diagnosed BEFORE she was 6. These resources, and access to appointments to help her, are extremely expensive, and coupled with every day bills, groceries, and our other two children (who are always missing out because of Tegan’s needs), these things become out of reach for Tegan. So why is it that the government thinks that at 6 years old, the child can just ‘flip a switch’ and suddenly not need any of those things anymore?
Sara Cartwright
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