 A safe place to come for advice, support and inspiration.by Seana Smith on Tuesday, February 23rd, 2010What a lovely phrase that is. It’s just what we wanted the Australian Autism Handbook to be, but didn’t ever express it quite so well. “A safe place to come for advice, support and inspiration.” Have you heard of Autism United? Autism United is a new network for parents, professionals and people with an autism spectrum disorder. It has been created by a mum called Nicole and uses the Ning platform. Ning is a simple to use online social networking site builder. You can join and then post photos, videos, add your comments to the blog, ask questions in the forums… lots of ways to communicate with others. In the past I’ve been a very active member of some Yahoo groups, and am also a fan of some good autism-related Facebook pages. But I think the Ning framework is the best I’ve seen yet – for me it is lovely to see photos of members. For we visual people it really helps to build the community. You can find out more about Autism United at the website:
I emailed Nicole to ask why she had started Autism United and she replied: “The main reason that I wanted to start this network was because although these days you are hard pressed to find anyone who is not affected by autism, most of us are still dealing with it on our own behind closed doors. I figured that if I feel lonely, isolated and often at a loss then, many others must feel the same esp those who are just starting out. I had been talking about doing something like this for some time as I felt there was a real need. All the challenges that we faced over Christmas gave me the push to get started.
To be honest I think over the past couple years I have been working through different stages of grief since Dillon’s dx but over recent times was determined to turn that into something more proactive. My vision for this community is for it to be more than a forum, but a real community, be virtual or otherwise. I am hoping that we can make a difference in each others lives and even go the extra mile to make changes.”
I also appreciate very much Nicole’s notes: “Autism United Guidelines So true! We all have enough drama in our lives without finding it online as well. A little light reading….by Seana Smith on Wednesday, February 10th, 2010Have you heard of the magazine “Autism Asperger’s Digest”?
This Texas-based bi-monthly is published by Future Horizons, one of the largest publishers of autism books and materials in the world. The magazine aims to provide “real life information for meeting the real life challenges of ASD” and it’s just reached its 10th birthday. You can read more about the magazine here: And more about Future Horizons here: I subscribed to the magazine last year after having read it sporadically in the past. I do like it a lot, there’s a great deal of variety with lots of information plus plenty of thoughtful and well-written stories from parents. Here are some of the articles from the current edition. * Step by step teaching guideline for parents of significantly impaired children with ASD. * Vision therapy: ideas for school and home. * A Column from Ellen Notbohm * Early Intervention … 10 years later! * Temple Grandin’s column titled “Learning never stops.” Some of the adverts made me feel a bit distressed eg one for hyperbaric chambers encouraging the reader thus: ”Don’t put your miracle off any longer. Give us a call today.” Yuck! That’s too exploitative for me… not that I have anything against hyperbaric chambers (I know there are the subject of much research just now) nor indeed miracles… but people who PROMISE miracles… harumph! But I’m a believer in that old maxim: ”Take what you like and leave the rest” and I do find a lot to like in this magazine.
High School – the first three daysby Seana Smith on Friday, January 29th, 2010Well, we made it, and yes, I did cry. Tears trickled as I dropped my son Tom off and when we new parents listened to the teachers talking at our first general parents’ meeting. It all really took me back to Tom’s very first day at school seven years ago, but my emotions were totally different. Then it was anxiety and hope and concern and relief all in a big teary mess. This time was pride and gratitude most of all. I’m so proud of my son, and so grateful to his teachers for sharing the pleasures and pains of his care as he grows up to be a man. And when I say that WE made it… well, it was a joint effort… and we parents did talk about how we felt like new boys and girls too. A big job for me is to make friends with other parents, to be aware of who is who and to be able to support Tom very much as he begins to make friends with other boys. This will be much trickier than at primary school, but I know that I can help him a lot, explain his oddities to both parents and children. I must also help my son to get the right bags, books and clothes to the right place at the right time… it’s no little matter when geting all four children ready for school and preschool in the morning! Tom will be terribly anxious if he misses anything so I need to keep my wits about me as we do this.. and I don’t find the whole thing easy at all. Tom’s a very social boy, and indeed rather over-social sometimes. The social aspect of school isn’t going to be the biggest issue though, it’s the academics. Tom has serious learning difficulties and a language disorder. His teachers should be well briefed that Tom needs to have a modified curriculum, which I imagine is quite a burden for them. Tom (and I!) are quite blithe about his learning issues, but I do fear that one day he may be more aware of his differences and then will need lots of support. Anyway, this is the start… I am so glad to have found a school which is very welcoming to our family and where the lines of communication seem to be strong. In fact I am just off to a meeting with his teachers now. Must dash, but one final thought…. Tom’s first day at high school reminded me also of my first day at high school way back last century… especially in the immediate crush on the head boy… haven’t I matured at all in the last 29 years??!!
Rolling Out the Autism Specific Early Learning and Care Centresby Seana Smith on Friday, December 18th, 20092010 will see the start of something new for Australia, government-funded full-time child care centres for children with autism spectrum disorders. These will be a real boon for working parents and for families with lots of children especially. There are six centres opening next year which will provide places for 120 children. So this is, like the Helping Children with Autism package, a good start… but just a start in the campaign to provide expert, intensive and proven early intervention programs for every single Australian child with an ASD. To read all about the centres and find out where they all are, click below: As ever, it’s a great idea to get your name on a waiting list early, here’s a link to a pdf with info on how to get on the waiting list for the SW Sydney Centre: http://www.ku.com.au/resources/other/Marcia%20Burgess%20ASELCC%20Centre%20Brochure.pdf
More YouTube – Video Modelingby Seana Smith on Thursday, November 26th, 2009Here’s another great use for YouTube, using clips as video models. The link below is to a video of a boy getting a haircut, and could be used by all sorts of kids to give them a preview of what might happen. Parents can also look at this and see the sorts of thing they could film themselves to show their own child.
On the subject of video modelling, a group in the US is getting together to look at promoting its use to schools and families. If you have an interest in video modelling, you might like to join. Technology Integration in Special Education
And if you are asking:
What is video modelling???
Here is a bit of information I have written about it:
What is video modeling? Video modeling (VM) is, simply, the use of video to teach something new to a child. The aim is to have the child imitate the “model” shown.
What can be taught? Studies have shown that VM can be effective at teaching: conversation skills, self-help skills, requesting, perception and expression of emotion, toy play and many other play skills. A short selection of academic articles is given below.
University studies are all very well, but can VM help my child? Excellent question! If your child loves to watch television, that is a great start. If they already copy things they have seen on television then all the better. The only way to really find out is to try.
How do we get started? There are two approaches; either make your own videos, or buy some commercial videos. Several types are available, some of which have been made specifically for children with an ASD (Watch Me Learn and Fitting In and Having Fun.)
Making your own. First decide exactly what it is you are aiming to teach your child. As an example, if you wish to teach toy play with model cars, then find a person whom the child finds highly reinforcing (it could be mum, dad, granny or a sibling). Video the model doing some simple car play, using simple language of the type the child uses, or just making car noises.
Make a 2-3 minute video. Show this to the child 2-3 times and then show the same toys to the child and encourage the child to play. If this works, then keep on making lots of different mini-videos for the child to watch so that the toy play can expand from the learned scripts. If it doesn’t work, show the video some more times. Try it again using different toys. Some of the professionals you consult may know how to help you with VM. Do ask them for help and advice. For some children VM is a very powerful teaching tool.
What is Video Self-Modeling? This is when you film the child doing an activity, edit out all the bits where things do not go well, and make a video of the child being succesful at eg soccer, pronunciation, peer play. You can fake the filming to make the child look as if he can do a new skill eg being able to count, gross motor skills. Then show the child the video 2-3 times and see whether it helps him or her master the new skill.
Isn’t watching TV bad for our kids? Yes !! Watching too much TV certainly is a problem, and many of our kids with ASD become real addicts. But there are therapeutic videos to watch and many of our kids are visual learners so it can pay to use the natural advantages they have to help them learn. Don’t hide the TV and videos – work on the programming !
Inspiration from a YouTube videoby Seana Smith on Tuesday, November 17th, 2009Here is a very lovely video from an Autism Association in Illinois, USA. I’m sure this will touch the hearts of everyone who watches it. I love seeing such simple yet powerful messages about ASD, and this is delivered really beautifully. Ahhh….. the makers of this have spoken for us all. It’s one to share with family and friends and especially with those who don’t already know and love a person on the spectrum.
DNA research and treatment – from Aussie researchersby Seana Smith on Friday, November 13th, 2009Here is some news of a new study from the University of South Australia. Benison and I have met Dr Manya Angley twice this year and really enjoyed her talks as well as just chatting to her. Dr Angley has a child who has autism and so she knows the condition very well and from the personal as well as the professional angle. I have pasted the full news story from Science Alert below. Here follow a link about the study from Autism SA. http://www.autismsa.org.au/newsletter/articles/article_009.html You can read Dr Angley’s biog here: http://www.unisanet.unisa.edu.au/staff/Homepage.asp?Name=manya.angley Personally, I find it tremendously encouraging that there is some real, practical research going on in Australia into both treatments and causes of ASD. I’m keen to get the word out about studies as they are done, and to encourage families to participate. I can get all emotional about this – hooray for people doing this work and for those who financially support them! Ten years after diagnosis I am not so desperate to know exactly the type of ASD my son has and what mix of genes, and possibly, environment led to it… but I do hope to know one day…. maybe it can be spotted very early if our kids have children, maybe it can be eased or even prevented with super-early intervention… there’s a lot of research going on and a lot of hope for the future of lots of children….
South Australian scientists have embarked on a new research program looking at whether DNA damage is greater in children with autism than in children without autism. The University of South Australia’s Sansom Institute for Health Research, together with CSIRO Food and Nutritional Sciences and Flinders University, will also investigate whether certain vitamins and other nutrients can help treat some aspects of autism. Dr Manya Angley from the Sansom Institute’s Autism Research Group says United States researchers have shown that the folate/methionine metabolic pathway, which involves key chemical reactions in the body, is significantly different in many children with autism compared to non-autistic children. “This pathway is involved in many key biochemical functions, especially maintenance of healthy DNA,” she said. Professor Michael Fenech from CSIRO and University of South Australia says the study will be carried out in two parts. “The first part aims to establish whether Australian children with autism have an abnormal folate-methionine pathway by looking at levels of certain chemicals in their blood and determining if there is a relationship with autism behaviour,” he said. “The second part looks at whether giving supplements to correct the blood profile improves autism behaviours. “Specific combinations of vitamins and other nutrients can potentially reverse DNA damage associated with normal ageing and neurological disorders such as Alzheimer’s disease, Parkinson’s disease and Down syndrome. “We want to see whether DNA damage is elevated in autism and whether supplements are effective in treating some aspects of autism.” Dr Philip Thomas at CSIRO will be supervising the DNA damage aspects of the study. The researchers are hopeful that the study may lead to better outcomes for individuals with autism. The ultimate aim is to develop personalised nutrition based on an individual’s own genetic makeup. UniSA PhD student Penelope Main is currently seeking participants for the study. Ms Main says participating in the study has many benefits including free blood testing for nutrient status and psychological assessment with carers being given a comprehensive report. “It is also an opportunity to help move Australian autism research forward,” said Ms Main. Children and adolescents with a diagnosis of Autistic Disorder, their siblings and controls (without a family history of autism) are currently being recruited. Interested individuals should be aged under 15 years and not currently taking folate or sodium valproate (Epilim). Editor’s Note: Original news release can be found here. To learn more or participte in the study, contact Penelope Main. ASD Families On Videoby Seana Smith on Thursday, October 29th, 2009
Have you had a look at the videos on the Raising Children Network autims website yet? So far there are 10 short videos posted there, all interviews with lots of different parents and each covering a single theme. http://raisingchildren.net.au/articles/asd_diagnosis_video.html There are so many stories here, and plenty of good ideas and advice. You may end up nodding as you hear these parents talk, they may offer you some hope and inspiration. They subjects discussed include diagnosis, extended family, schooling and early intervention. This is a fantastic use of the internet, showing it’s great power and potential as a tool for sharing of stories, ideas and useful information. The families who have been filmed for these videos have done a really good job, and they really deserve a big “thank you” for their honesty, in sharing their stories- it’s not an easy thing to do. I still get all emotional at times when I watch these videos- and what a range of emotions, the pride, the hurt, the joy, it’s all there and more in these family stories. Well done also to Fiona and colleagues at the Raising Children Network who have done a great job.
WA Research on rise in diagnosisby Seana Smith on Tuesday, October 20th, 2009Here’s a news report about a forthcoming journal article which is relevent to our blog posts on rising diagnosis: http://www.sciencealert.com.au/news/20091910-20024.html Perhaps Benison could have a look at this article when it’s published and give us her precis and thoughts ???
This is Australian research from WA, which is currently the state with the best figures for ASD numbers. However, an Australia-wide register of ASD is going to happen fairly soon and we’ll post more info about that when it launches.
1 in 100, a real life storyby Seana Smith on Tuesday, October 13th, 2009
I’m so interested in all these reports into research about the incidence of ASD and the roaring rise in diagnosis. It’s good to have Benison giving us a simple explanation of the science and I am sure she is right to note that many people are living with ASD and getting on pretty well. I certainly know many dads who have diagnosed themselves with Aspergers and then had that diagnosis confirmed by professionals after their children have been diagnosed as being somewhere on the spectrum. However, I’m also sure that there are many adults with ASD who have never been diagnosed and whose lives may be the worse for that, not to mention their families’ lives. Here’s a real-life story to illustrate this. A little 3-year old boy doesn’t really talk much, he just says the odd word. He used to bang his head a lot when he was in a cot and he looks at his hands a lot. He doesn’t really make friends with other children and relies on his big brother to talk for him. I know what you’re thinking… this child is about to get an assessment for an ASD. But no… read on… The little boys mother says he starts to talk a bit more at four. He doesn’t make real friends at school and has some learning issues. He still relies on his big brother a lot. He goes on to high school. He is a wonderful artist and loves those lessons most of all, he wins prizes in competitions. He still doesn’t socialise at all. He loves everything to be organised and neat. I know… you’re getting warm… he’s about to be diagnosed with Aspergers… But no… read on…. This young man is offered a place at art school. He goes but only manages to stay six weeks. He comes home and stays living with his mother. He never gets a job, he never leaves home, he never has any friends of his own. He can’t leave the house alone, he is treated for anxiety with Valium. After many years he manages to stop taking Valium. He starts drinking instead. When this man is in his 40’s a cousin’s young child is diagnosed at with an ASD. This middle-aged man’s mother wonders, for the first time: ”Could my son have Aspergers?” Could he? Could this man be one of the hidden hordes? Could he be one of the many adults with an ASD who have never had the benefit of a diagnosis and so no proper treatment or understanding? I’m not sure but I’d certainly like to know whether this young boy who banged his head and then grew into a man with no job, home of his own and no friends does have an ASD. He’s my cousin you see, and mine is the son who did get that diagnosis aged three. And maybe my son is just like my cousin, just forty years younger and a lot luckier. SEARCH The essence of publishing is the exchange of ideas from author to reader, be it through the printed word or increasingly the computer screen. At JCP our authors are highly regarded as leaders in their fields so we have introduced this blog to enhance the connection between author and reader. A blog is real-time communication, interactive and relevant. The author contributes individually on issues that concern them – and our readers have the opportunity to comment and connect. So please read, enjoy and use the JCP blog. Books are only part of the JCP story. acceptance
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