Why We Need the Research Autism Website

On this page different people explain why they think the Research Autism website is important.

Patron's view - Rt Hon. John Bercow MP

Speaker of the House of Commons, father of a child on the autism spectrum.

Rt Hon John Bercow MP, Speaker of the House of Commons Research Autism is the only UK charity whose sole focus is to evaluate and conduct scientific research into autism interventions. Research has to be the starting point if we are better to understand this complex condition, and it is for this very reason I chose to support them as patron. The charity is committed to a programme of ground breaking research that is important to the autism community and that will improve quality of life and support social inclusion; something to which I believe every UK citizen has the right.

One of the key starting points for Research Autism, and something that stands out for me, is its deep and well informed understanding of the needs of the autism community. By talking with, and listening to, people with autism, their families and carers, there is a real sense that the charity's research programme is driven by the priorities of those it aims to serve. This, coupled with its focus on delivering practical outcomes to improve the quality of life, and also ensuring that any outcomes from the research are widely disseminated and understood, means that it acts as a catalyst for change. I commend its work and look forward to seeing it grow over the coming months and years.

Parent's view - Dr. Jacqui Jackson

Parent and scientific advisor to Research Autism
Direrctor and Member of Research Autism's Scientific and Advisory Committee

Jacqui JacksonAs a parent of children with various autistic spectrum disorders and related conditions, I remember all too well those early days when it first started to dawn on me that maybe my sons were not quite the same as other children. I also remember how difficult it was to find reliable information about what to do next. It seems that on a regular basis, more and more 'interventions' are heralded, some making claims to improve the quality of life for the child and their family and others making more far reaching claims about potential 'recovery'. For parents with newly diagnosed children, the vast array of interventions is both confusing and overwhelming and often comes at a great cost, both personally and financially.

Just to introduce myself, I am Jacqui Jackson and though you can read more about me on the 'people' section of this site, my main role in life always has and always will be as a parent of 7 beautiful children. I am now in the rather dubious position of parenting a mix of 8 very different children and young adults, 6 of whom are in the throws of their teenage years and young adulthood and trying to find their way in the world. Between them, the boys have collected labels of PDD-NOS, dyslexia, dyspraxia, Asperger Syndrome, ADHD and autism, although my thirteen year old son seems to have more letters after his name than many of the professors involved with Research Autism! I therefore prefer to say that all my boys and actually, one of my girls too, have an autistic spectrum disorder and leave the fine details of which label actually fits them, to the professionals!

As all of you parents know, the way autism and in my case, ADHD too, affects us as parents is almost impossible to describe. Autistic spectrum disorders are pervasive, not an area of life being untouched. From the minute we suspect something is different about our children, life takes on a new slant, the main commonality being the need to develop a fighting spirit. From assessment to receiving a diagnosis, to gaining appropriate support particularly at school but also with therapy in the early years, for most of us, life seems to be a battle.

I became involved with Research Autism after hearing that well renowned and experienced professionals were willing to dedicate their time and energy into finding ways to make our life easier. I am well aware that ongoing research is needed into the cause of autistic spectrum disorders but meanwhile, there are many thousands of individuals and families who want to DO something. By offering an unbiased overview of as many interventions as possible, this website will hopefully be a place where parents can feel secure in the knowledge that each intervention is presented in an impartial way, giving scope for parents or professionals to seek information.

In the confusion of a diagnosis, searching for ways to help our children find their way in life can, at times, feel like an uphill struggle. For those parents and for those who receive a diagnosis later in life, the vast array of interventions available to us cannot be underestimated. That's why the Research Autism website will provide such a valuable resource to individuals with and the families of those affected by an ASD.

GP's view - Jamie Nicholls

Ex-General Practitioner, and father of an adult with autism
Member of Research Autism's Scientific and Advisory Committee

Jamie NichollsThe General Practitioner, or nowadays we should refer to the Primary Health Care Team, is usually the first port of call for anyone seeking help or advice on a medical problem. At the stage of presentation, autism is usually regarded as a medical problem, and GPs are often the instigators of a referral for a detailed and more expert assessment. Although the GP may instigate the diagnostic process, he/she will probably have limited input afterwards until a diagnosis is established.

After diagnosis comes intervention. What are we going to do? What, if any, treatments should be used? What therapies work, and which do not? What harm can they do? These are all questions which can be presented to the GP by a person with ASD, or their carer/parent.

Very few GPs will have any expert knowledge in this area. We are trained as generalists, not specialists. What we are expected to know is where this information can be obtained, and that the source is reliable.

Until now, finding such information has been virtually impossible. There are countless sources making claims of efficacy which are largely unsubstantiated, and rarely subject to any independent scrutiny.

The purpose of Research Autism, and this website, is to provide a resource for anyone, not just medical practitioners, to seek advice, guidance and independent unbiased opinion on the various interventions used in the treatment or management of ASD. It is a resource that I can use during a consultation to give or reinforce advice. My patient can also use it.

I hope that many of my GP colleagues will bookmark this website and keep it in their 'favourite places' file. Try calling it 'Autism-Interventions' for quick reference.

An Academic's View - Chris Cullen

Emeritus Professor of Clinical Psychology at Keele University
Ex-Trustee and previously Co-Chair of Research Autism's Scientific and Advisory Committee

Professor Chris  CullenFor researchers and academics, the Research Autism website will be able to serve a number of useful functions.

First it will allow active researchers to understand the priorities of families and people on the spectrum . So little is known about effective interventions and ways of helping and having a clear idea of what people really need to know is a great help to researchers. For example, we know that areas such as sleep, challenging behaviour, employment, acceptance in the broader community, and so on are all areas of great concern for families and people on the spectrum. Yet there is so little published which is directly helpful.

Second, the website is a useful source of information on what has already been done in any particular area. Researchers will be able to drill down and see what has already been published on the topic they might be thinking of working on. Of course, there are other search engines available to academics, but the Research Autism site also 'evaluates' studies from a scientific perspective.

Finally, the site is a veritable mine of information, which researchers will find tremendously useful. They will be able to see who else in the academic world is researching actively, and will be able to use the site as a means of networking.

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21 Jun 2018