I’m an IT person what immediately strikes me is that both of these discussion forums are “closed” i.e. you have to go through a registration procedure even to just read the messages.
This is a personal opinion – I’m delighted to find these forums and have already found some valuable contacts and projects but wearing my “what about the punters” hat, I feel that having these closed to reading by ‘anonymous’ users is a pity. As a technical administrator of various forums on Scottish websites over the years I usually find from the usage statistics that the ratio of people who read messages on open systems (no registration for reading) to those who actually post a message is about 100 to 1 i.e. about 100 times more people will read a message than will ever contribute.
If web-based electronic research communities require registration to view they are also immediately cutting themselves off from the possibility of their topics and current research discussions ever being found by people using search engines on the web like Google. Thus the general public is effectively blocked from easily ‘stumbling’ on relevant topical material. There’s so little research on autism available to the general public, most is currently locked up in subscription-only academic journals, every scrap is valuable.
I can understand the need for some locked forums relating to specific individuals/courses/individual privacy notions but for general research and debate? I find it difficult to understand. One of the features of autism is considered to be “…impaired social interaction…”. Indeed. See irony?
“The Scottish Intercollegiate Guidelines Network (SIGN) develops evidence based clinical practice guidelines for the National Health Service (NHS) in Scotland. SIGN guidelines are derived from a systematic review of the scientific literature and are designed as a vehicle for accelerating the translation of new knowledge into action to meet our aim of reducing variations in practice, and improving patient-important outcomes.”
If you want to know about a particular health condition the guidelines can be very helpful for giving you an overview and an indication of potential therapies that may be available. For those in Social Care/Work they could help you understand treatment plans of your service users e.g. if your autistic clients have comorbid conditions such as epilepsy or depression. There are over 100 guidelines available and the guidelines are provided as downloadable PDF documents.
There is a free SIGN Guidelines app [Android] and SIGN Guidelines app [Apple]
They currently have one guideline and an app specifically for autism in children.
The Open University (OU) provides a wide range of courses and is a long-standing centre of expertise in distance and online learning in the UK. Many people already in employment use the OU to gain or supplement existing academic qualifications in subjects such as Social Work. They have provided a free unit: The autistic spectrum: From theory to practice
“Autism Data is the ideal research tool for anyone researching autism and Asperger syndrome. It is, as far as we are aware, the only database of published material on all aspects of autism, open for everyone to access on the web. It lists over 30,000 published research papers, books, articles, videos and other materials.”
“if you’ve met one person with autism…you’ve met one person with autism”.
Even in this project we always have to be aware that although we will be using broad labels like ‘autism’ our intention is always to provide uniquely personalised information about individual people. We want to collate people/places/things that are important to only that person. We can’t assume if something works well for one person that it will work for everyone. By the very nature of autism we have to expect varying degrees of ‘success’ or ‘failure’ for different methods but we will never be able to come up with just one approach/tool that addresses everyone’s needs.
One phrase we will be using a lot is autistic spectrum and the rather horrible but commonly used acronym ASD – Autism Spectrum Disorder. Just like in a rainbow there’s not just one or two colours/issues but a range.
But we need to start somewhere so let’s take a look at how this condition is currently defined (Beware, this changes over time so will only reflect current thinking).
“…ASD can cause a wide range of symptoms, which are grouped into three categories:
problems and difficulties with social interaction – including lack of understanding and awareness of other people’s emotions and feelings
impaired language and communication skills – including delayed language development and an inability to start conversations or take part in them properly
unusual patterns of thought and physical behaviour – including making repetitive physical movements, such as hand tapping or twisting (the child develops set routines of behaviour and can get upset if the routines are broken)…”
When we are researching resources that would fall into any of the three categories we’ll try to tag them with ‘social’, ‘communication‘ or ‘patterns‘ as appropriate.
Also note the important word ‘grouped’, within each of these three broad categories there’s a vast range of examples. In Scotland, one of the common diagnostic tools used by health professionals is called ‘DISCO’, now before you start boogying on down, in practice this will materialise as the rather less funky title ‘Diagnostic Interview for Social and Communication Disorders‘. This involves working through a whole binder full of structured criteria. Diagnosis is time consuming as it usually also involves interviews with other family members if possible.