Posted by: 15specialneeds | May 17, 2010

My Saturday…

Hi Dear Ones,

Well Saturday I got up at 7.30am and went out for the WHOLE day and got home just after 5.00pm. Was I exercising, shopping and having lunch –  no! I was at the Third Annual Autism Conference held by Stanford University. I have to say that I really enjoyed my day, and although Luke is not truely autistic, many of the issues concerning his development fall along similar lines and therapy strategies.

Anyway, it was a good conference (not as good as last year). Many of the talks were highly technical in terms of detail about research being done on various parts of the brain or genes. I was impressed to see Luke’s little duplication flashed up on a power point presentation given by a geneticist. In terms of genetics, six percent of children diagnosed with autism have a genetic disorder, which is quite a significant number, so it appears that all children in this area are  offered genetic testing if given a diagnosis of autism. This is great news.

My favorite paper was about a study that had been done by Marsha Mailick Seltzer who had completed research on how families in particular mothers were affected by Austim Spectrum disorders in adolescence and adulthood. She made that great point that so many issues/articles/research is focused on children and early intervention, and that it is easy to forget the impact this diagnosis has in later life. I guess the encouraging thing that came out of the research was that this is a time (high school) there was a sense of improvement in the life of these teens and often behavioral issues tended to be managed. Research was also carried out on the stress levels of the mothers, and they also looked at the dialogue that mothers used when describing their special needs teen. It was found that those individuals whose mothers were warm and supportive, had better relationships with their teen that those who were overly critical. The point made was that, it often the adolescent years that you (as a parent) will be often be the most critical! Made me think of nagging Rebecca! Reminded me to tell her something good about her at least once a day! Okay, maybe every other day!

One of the more interesting talks was given by a doctor called Karen Parker, who has worked with rats and monkeys looking at the effects of oxytocin. This hormone is often referred to as the ‘love’ hormone as it is present in women when they go into labour and it occurs during the ‘let down’ phase of breast feeding. It is only found in mammals and for ethical reasons it cannot be injected into directly into the human brain, but tests have shown that when it is injected in to rats and monkeys there are significantly increased social bondings. They have been able to show that when given to people with autism, via nasal inhaler, there is greater eye contact and social gazing.  It has been making the headlines and a funny article can be read by clicking HERE!  I had to laugh, there was a woman at the table who obviously had a ‘thing’ about testing on animals, she kept muttering “ohh…poor rat….ooh poor monkey…” It drove me CRAZY! Honestly, I would rather they test on animals and not humans! How do people think we get these amazing drugs that improve that quality of life for millions of people everyday?

The last talk was given by my personal favorite Dr Heidi Feldman, she was on the assessment panel when we took Luke in to Lucile Packard to the Infant Behavior and Development Unit. I will never forget her first question to Simon and I ” What does it mean to you if I tell you that you son is Autistic today?” I don’t know how I managed not  to cry and was able to reply, that for me, it would mean lots of work in educating myself on how best to help my Lukey. Her talk was on language development, which was very appropriate to us at the moment, given Luke will be three in several weeks and cannot say anything! (Mama is emerging, yay!) Basically she went through what was typical for children and then went through the types of therapies. She said that ABA, was possibly one of the best start with, if these is no emerging language by three, and that while ABA, has had some bad press it has been used very effectively to get the ball rolling – so to speak. Basically like all things it will depend on the quality of the therapists using any technique!

I really enjoyed my day, they also provided nice coffee, snacks and lunch. I was with my friend Wendy, whose little girl Caitlin has the same condition as Luke (how amazing is that) and we were able to chat at great detail what our little ones were doing, the services that we were able to get and just be supportive of each other. One again, it is amazing that while they have the same condition, they seem very different – but similar! We should have ended it with a cocktail somewhere, but my day ended playing with both boys on the trampoline at 9.00pm in the dark, having fun!

Rx

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Responses

  1. You are really good at summarizing the day! It was nice seeing you again.

    Like


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