Donna attended the National Autistic Society Conference in Reading on the 3rd June where she had the opportunity to hear the renowned speaker Dr Temple Grandin. Here is Donna’s blog of the day:

This was one of the best conferences I have attended. Temple’s innovative, honest and creative approach to supporting individuals on the spectrum and their families was inspiring. I shall also comment on a couple of the other speakers that were there.

Dr Temple Grandin

Dr Grandin did not talk until she was three and a half years old, communicating her frustration by screaming, peeping and humming. In 1950 she was diagnosed with Autism and her parents were told that she should be institutionalised. She tells her story of ‘groping her way from the far side of darkness’ in her book Emergence: Labelled Autistic a book which stunned the world because, until its publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.

Temple became a prominent author and speaker on the subject of autism because she said ‘I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.’ She went on to say that ‘this dictum has meant sad and sorry lives for many children diagnosed, as she was in early life as autistic’. Temple said that to these people, ‘it is incomprehensible that the characteristics of autism can be modified and controlled. However, she feels strongly that she is living proof that they can’ (from Emergence: Labelled Autistic).

Even although she was considered “weird” in her young school years, she eventually found a mentor, who recognised her interests and abilities. Temple later developed her talents into a successful career as a livestock-handling equipment designer, one of very few in the world. She is now one of the most accomplished and well-known adults with autism in the world. Her fascinating life with all its challenges and successes has been brought to the screen and features in major television programs, such as the BBC special “The Women Who Thinks Like a Cow”. Temple has recently been named as one of the Times Magazine 100 most influential people in the world. She has been recognised for her work as a world-famous animal scientist and autism self-advocate.

A quote that I took down that I also thought was relevant for you to know was from a professor at Harvard University who said “ What do neurologists, cattle, and McDonald’s have in in common? They all owe a great deal to one women….Temple Grandin….an extraordinary source of inspiration for autistic children, adults, their parents – and all people”.

Temple went on to talk about ‘teachable laws’ to help families support their child/adult with autism. This included ‘manners, calm moments of explanation i.e: what not to do if for example the individual with autism is using only their fingers to eat and only certain foods’. ‘Perseverance and patience to use cutlery and try different foods which needs calmness and explanation’. There should also be ‘no surprises for the individuals with clear, specific facts of what to do and not to do’. Temple actually said that she feels ‘individuals with autism must be pushed gently to try new regimes’. Another big issue she talked about was sensory issues as she said for herself sometimes it can sound like a ‘poor mobile phone connection’ when people are talking to her, hence clear and specific instructions are important. Dr Grandin talked about a technique known as ‘Environmental Enrichment’ which research has shown can assist with repetitive behaviours related to sensory issues.

Another resource she told us about was a book called Carly’s Voice, for non-verbal people which tells the remarkable story of a young girl who started to communicate via a computer at the age of 10.

Temple feels strongly that individuals with autism should be supported to “show off” their personal skills and that this can be particularly helpful for sourcing job and employment opportunities. Her personal perspective is that the autistic person should not always be able to stay indoors but should be encouraged to get out of the house and try new things. Temple believes that individuals with autism can be everything they can be with the right support and environment.

She also gave us a lot of useful resources and websites:

We would be happy to consider buying any of these books for our library, please ask if interested.

Dean Beadle

Another keynote speaker was Dean Beadle, Journalist and Autism Speaker. Dean talked a lot about anxiety and how as an autistic adult this really affected him to the extent that he had to check things 100 times. He said that a key answer for him managing his anxiety was to go on-line and ‘find out the exact facts’. This he says ‘proves to the anxious person the facts about their worry of what will or will not happen’. He also said that at times his ritualistic behaviour makes him feel calm so not all behaviours are negative. Dean said that statistically ‘Obsessive compulsive disorder (OCD) in individuals with autism is 19% higher than someone without autism’. He also said that knowing the ‘now-next and –later, takes the maybe’s out of things and re-assures him’. Dean said that ‘autism is just normal/usual behaviour but with a magnifying glass over it and he has difficulty at times identifying his own feelings, referred to as Alexithymia’. Dean said that a good way for him to help with his anxiety was to not try and make him laugh about the things he was anxious about no matter how ridiculous they may seem, but to make him laugh as a distraction as this really helps to reduce his anxiety.

Jon Adams

Another keynote speaker was Jon Adams, Autistic adult and Creative Ambassador for the National Autistic Society. Jon is also an artist and Research Fellow/Artist in Residence, University of Portsmouth. He uses art as his ‘therapy’ which helps with his mental health and autism. Jon spoke about a charity called Autistica which campaigns for medical research to understand the causes of autism.

Jamie + Lion

Finally, I would like to tell you about another speaker:Jamie + Lion. Jamie is a Senior Accessibility Specialist with the BBC and is autistic. Jamie said that ‘normally he doesn’t ever speak until he is presenting’. Jamie carries around a soft lion with him everywhere he goes. Jamie talked about using technology to communicate and promote independence. He said that ‘independence needs stability at the core and autonomy which leads to independence’. Jamie gave a bank of resources and tools and technology for adults with autism to use and also said that we can tweet him if we have any questions and he will answer. His Twitter address is @spacedoutsmiles All of the following resources can be found on his website:

  • Proloquo4Text’ a text based communication app that he says ‘gives him a voice’.
  • Jamie says that at times he uses a SqueaseVest which is a tight weighted vest that he wears for no longer that 20 minutes at a time and this really helps him feel safe and manage his anxiety.
  • He recommends Findababysitter.com’, which he says is a fabulous resource for getting specialist support workers for adults with autism.
  • There is a personal wireless lighting system Jamie recommends called Hue Smart Lights’ which is perfect for controlling lighting on demand for sensory issues.

I hope you have found my thoughts on the conference useful. Please contact me if you have any questions or would like to know more.

 

Donna Nelson

Executive Manager, Pasda

 

 

 

admin News