The Autism Files: Not all programs are equal

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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The Autism Files: Where are all the Services?

Where are all the Services?

 In 2003 at the age of three my son was diagnosed with autism. The diagnosis was made by a team of clinicians, led by a paediatrician, in a large children’s teaching hospital in Brisbane. The news was both good and bad. It was good because the doctor was confirming what we already knew deep in our hearts, that he had autism, and now we knew for sure what we were dealing with. It was bad because – well this is autism we are talking about – it is a very complicated condition and we knew very little about it.

After delivering the diagnosis the paediatrician, seemingly upbeat, told me about the next steps in the process. He told me about the SEDU programs that are run by the Education Department in Queensland. These Special Education Development Units (SEDU’s) are ‘kindergarten’ type early intervention programs for children who need extra assistance because of Autism Spectrum Disorder (ASD), Down’s syndrome and other developmental conditions and disabilities. The program would run for a couple of mornings each week for a year or two and we would have to wait a few months before he could begin.

The paediatrician smiled and said that the hospital also had its own autism program that our boy could attend. This program was for young children and was one session a week (a couple of hours) for about 8 weeks. That sounded terrific to me (in my profound ignorance of best practice interventions for ASD) and I left his office feeling hopeful of the future.

On our son’s first day at the SEDU I had absolutely no idea what to expect. Playgroups had always been a problem for him, so attending a structured kindergarten with other children who also had special needs was a big black hole of not knowing as far as I was concerned. How was he going to cope? Would he eat his meals? Would he cry all the time and refuse to participate?

Well the day started out swimmingly with our son refusing to get out of his car seat in the car and then the progression into a monster crying fit. I didn’t know what to do! He was struggling so much I knew it would be very difficult, if not impossible, for me to carry him and his belongings into the classroom. My stress levels were rising with my blood pressure and the minutes were ticking away. I knew I couldn’t do this on my own so I locked the car and quickly went inside and asked for help. The director of the program (a wonderful and wise woman) nodded her head in understanding and came outside to assist me. Together we got that strong little boy with big fears and tears inside the SEDU.

I stayed for over an hour to see if he would settle and he did calm down enough to get through that first day, and the next and the next. The program was very well run and the teachers were knowledgeable and skilful in the area of ASD. He had assessments from speech therapists and occupational therapists, and the program was based around the results of these assessments. My son tolerated (sometimes even enjoyed) the program and improved in many areas because of the expertise and patience of the staff. But I knew it wasn’t enough.

After the diagnosis I had begun to do as much research and reading as possible in the area of autism. One thing stood out amongst the cacophony of ‘treatments’ for ASD and that was the benefits of intensive early intervention; intensive being the operative word and that meant 30 to 40 hours a week. These were primarily behavioural interventions involving a focus on learning theory and skills development with the use of Applied Behaviour Analysis (ABA). The SEDU program incorporated a number of these techniques but was only 9 hours a week and that wasn’t nearly enough to maximise the benefits for the child. It was a good step in the right direction but much more was needed.

I believed that intensive early intervention was the way forward for our family but when I looked around for service providers I found none. There were no programs in 2003 in Queensland that offered full-time placements in early intervention. I couldn’t believe it. The only option was self-funding an in-home program where I would have to arrange the employment of a number of staff who would implement an ABA type program (presumably designed by myself). The complexity and expense of this approach blew my mind and I didn’t know where to begin. I began to feel like a rat in a learned helplessness experiment.

to be continued

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Echolalia: The Autism Files

Echolalia: The Autism Files

Children with autism have a lot of problems with communication.

Some children with autism can’t speak at all. When my son attended the AEIOU* at Moorooka in Brisbane many of the children could not speak. Some children will grow up and never speak a word their whole lives. They may learn how to communicate their needs with sign language, picture-exchange systems (PECs)  or assistive communication devices (e.g., computers that speak).

Some children with autism have language delays but develop speech as they grow older. Some children repeat words and phrases (TV commercials, movie scripts, parental commands) in a parrot-like fashion, with no real understanding of the meaning. This is called echolalia.

My son used echolalia when he was younger. If we asked him a question he would immediately repeat the words.

Dad would say: ‘Hello Michael, how are you?’

Response from Michael: ‘Hello Michael, how are you?’

He had no understanding of what the words meant but he knew a response was required, so he would oblige us with our own words.

Like many children with autism he would watch his favourite videos (e.g., Nemo, Spot the Dog, The Wiggles) over and over again.  He would repeat large slabs of the story verbatim, to himself, when he was stressed.

Michael would repeat entire story books after I’d read them to him once or twice. He memorised every Hairy Maclary story book and he would ‘read’ the books aloud to himself while turning the pages at the correct spots. He couldn’t read at that age – he wasn’t even looking at the words. I don’t know how he did it!  This uncanny ability disappeared as he developed comprehension of speech.

As Michael got older and began to understand what the words meant he would use phrases from movies in the correct context when asked a question. Clever boy! If you hadn’t watched the movie you would never have picked up on what he was doing.  If you listened carefully you could tell he was exactly repeating a phrase from some show that he’d watched. He would use the correct accents and intonations. He is a great mimic.

When Michael was 3 he didn’t know how to call me mummy and maybe he didn’t know that was my name. I had heard him use the word as part of a repetitive script from some show but he never called out ‘mummy’ if he wanted something from me. He would just cry with frustration when his needs weren’t met. I became a mind reader.

One great day when he was 3 and a quarter he called me mummy.

Funny story:  We were at an indoor playground one day and Michael was calling out to me ‘mummy’. Then he noticed that some of the other children were using the word mummy. He was surprised, but had the solution, he called me ‘Gabrielle’. I explained that other kids also used the word mummy. It is very confusing if you think about it. Lucky he went back to calling me mummy as I was just getting used to it.

Michael is now 11 and appears most of the time to speak like other children his age. This would not have been possible without the help he has received from speech pathologists (thanks particularly to Leith Johnston).

He still has some communication issues. He still has difficulty processing speech and it helps if people slow down and speak clearly to him. When he is stressed or nervous (like in the paediatrician’s office) he will mumble and whisper while looking down at his feet, maybe flapping his hands a little. He has difficulty with the reciprocity of speech  – the ability to take turns and share in conversation. He tends to speak about his special interests and he will interrupt conversations to ask questions about his latest obsession.

But if Michael is calm, relaxed and in a happy environment his speech normalises and he is just like any other boy. Sometimes in the morning when I am still trying to wake up, I can hear Michael and his younger sister chatting away happily together about something they love (like  the latest tablet game) and he is at ease and speaking fluently in a completely typical manner.

Now that makes me smile 🙂

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* The AEIOU Foundation is an intensive early intervention organisation in Queensland for children 3-6 years old. They now have numerous centres throughout the State.

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Guest post on Spirit of Autism

One of my articles on Autism Spectrum Disorder ‘An Iceberg: The Autism Files’ has appeared over at Debi Taylor’s blog Spirit of Autism. Click here to have a look see.

Debi blogs from Atlanta, USA and she describes Spirit Of Autism as offering ‘practical tips, resources, tools and strategies to teach you how to find clarity and balance to help your child step into their best self!’

‘Debi Taylor is an Autism Specialist with over 3,500 hours of research and implementation of real-life tools and solutions for children and families affected by Autism. Through her experience and dedication to her own child, she created a transformational system for children on the Autism Spectrum that covers fitness & nutrition, tips and tools for identifying sensory vs. behavior, coping strategies, calming techniques, Autism safety, emotional support for parents and more’

Thanks Debi 🙂