The Autism Files: Not all programs are equal

The Autism Files: Not all programs are equal

early warning signs (742x470)

Remember the paediatrician who said that the teaching hospital where Michael was diagnosed had an autism program? Well during the year that our son was attending the SEDU (age 3) we decided to enrol Michael in this hospital program. We filled out all the paperwork required and eventually got a letter saying we could start on so and so date with a group of ASD children about the same age as Michael.

On the day of the program I was filled with optimism but I was also nervous because I didn’t know what to expect and how Michael would react. I wasn’t happy that it was taking place in a hospital. First, it was always hard to get a car park in this particular hospital because of the sheer size of the place and numbers of people going there every day. Second, it was stressful for Michael because it was a crowded, noisy place with a great potential for sensory overload. This was the place he had come on several occasions to be assessed and diagnosed and it was likely he associated the hospital with mostly negative experiences – I know I did.

Well, I finally found a place to park in a multi-story building across the road from the hospital. I got Michael out of the car and holding his hand walked across to the hospital via a pedestrian bridge. It took about 15 minutes to find the correct floor and the exact room. We were asked to sit in the waiting room until everyone had arrived. Michael looked at the floor most of the time, avoiding the visual stimuli of a busy hospital, and held his body in the twisted position of someone who didn’t want to be there, flapped his hands and repeated words in distress.

When the program started all the children were asked to come into another room, where there was a whiteboard, some rugs on the ground to sit on, and a large working space. There was a sink near the door with a hospital tap, the ones that you can turn on with your elbow. The children that were in the room with Michael were relatively well behaved. Michael seemed to be the only one that was super stressed.

The female program leader stood near the whiteboard, asked all the children to come and sit on the rugs and proceeded to talk about something. All I knew was that this did not seem to be the way to go with ASD children. Where was the fun stuff to play with and the nice things to look at? Michael had great difficulty in processing verbal language, as did most ASD children. He wasn’t listening to the lady at all. He kept getting up and wandering around the room and I would hustle him back to his place on the floor.

When he spotted the sink and tap his eyes lit up and he toddled over to this watery delight; remember his obsession with water. He turned the tap on and he turned the tap off, he turned the tap on and he turned the tap off, until Mummy stopped him. This happened repeatedly for much of the session. The other children, to my amazement, sat in their spots and listened to the lady at the front. I didn’t understand – didn’t these kids have autism? Suddenly my high functioning ASD boy was the lowest functioning in the room and he was having a field day.

After the verbal introduction the children received 10-15 minutes of a type of speech therapy activity, which again involved lots of listening. Michael didn’t respond at all and ran over to the door, opened the door and ran down the corridor, closely followed by Mummy. I caught up with him and brought him back to the teaching room. Five minutes later he ran off again and I ran after him and brought him back.

Everyone was staring at us and looking concerned; we were disrupting the program. I was getting decidedly pissed off. Why didn’t the program have any ASD friendly activities? Why hadn’t they started the session with some play-based activities to engage the children? Why was my son the only one acting like he had autism? Michael decided to make a third attempt at escaping down the corridor so I grabbed him by the arms for dear life and told the coordinators that we had had enough and that we would have to leave.

I left that hospital with the feeling that I had been hit in back of my neck with a blunt object. I managed to get Michael safely in the back seat of the car, payed the exorbitant car parking fee and drove home with tears streaming down my face, apologising to Michael. We never went back.

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Voice for Autism

Voice for Autism

Voice for Autism

The Voice for Autism campaign in Canberra is being held on the 2nd September, 2010.

It’s simple – if you live in Australia and have a child with an autism spectrum disorder, you can assist the campaign by emailing a photo of the child (or a drawing from them) to the organisers. They are hoping to lay out 1,000 photos of autistic children (of all ages) on the lawn in front of Parliament House. We are speaking on behalf of children who often cannot speak.

There are not enough services for children and adults with autism spectrum disorders.

I have reproduced below a letter from Leanne Madsen promoting the campaign:

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Hi There,

I would like to introduce myself. My name is Leanne Madsen and my son Nathan was been diagnosed with High Functioning Autism 12 months ago. I attend a group here in Sydney called KU Starting Points. It’s a support group for parents as well as a free service for our children. While attending an Early Intervention Program through KU, I came into contact with other mums who were equally frustrated with the lack of treatment our children receive from the government. Thus, started The Voice For Autism group.

Glenda Graban is a co founder of The Voice For Autism. Her son Ryan has also been diagnosed with Autism and she also has 2 year old Jake, who has Down Syndrome. Glenda is also the founder of The Right Start foundation which supports families touched by Down Syndrome and has been successful in having Down Syndrome removed from the medical defect register here in NSW.

Simone Ramsey-Spence, also a co founder, is mum to Alec. Alec is 4 years old and also has Autism.

The Voice For Autism is campaigning in Canberra at Parliament House on 2nd September. We hope to place at least 1000 photo’s of Autistic children of all ages on the lawn of Parliament House to show the government just how many children are effected by Autism. We currently have a Facebook page with over 1,300 members. We also have a webpage up, however it is still under construction.

We have recently had talks with Nicole Rogerson and Elizabeth Sarian from Autism Awareness as well as Tony Abbott, the Opposition Leader. Nicole and Elizabeth have very kindly donated their marketing expertise and Tony Abbott is very interested in talking with us further.

We have the full support of KU Starting Points, Autism Awareness aka 1000hrs Campaign aka The Lizard Centre here in Sydney, AEIOU in Queensland and Friends for Autism in Perth. Glenda, Simone and myself have so far been successful in spreading the word for The Voice For Autism through radio interviews, newspaper articles and through the internet and the photo’s are coming in fast. However, we still need more!

The Voice For Autism would very much appreciate your help with spreading the word and asking other parents to email in their photo’s of their children to voiceforautism@live.com.au or they can post them on our Facebook page: The Voice For Autism: We speak for those who can’t speak for themselves. Alternatively, if parents do not feel comfortable with posting a photo of their child/ren, they may like to send in a drawing their child has completed. Also, could parents please list their child’s name, age, diagnosis and the state they reside in.

Alternatively, we are in the process of printing of flyers and brochures. Please advise if we could send you a few to place in your office.

Please feel free to contact my on 0422 842 576 at anytime should you wish to discuss any further queries.

Again, we would appreciate the help from you and your centre.

Thank you & Kind Regards

Leanne Madsen

The Voice For

A U T I S M

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