Autism: a continuum of emergence

Introduction
Since the first documented cases of autism conditions by Leo Kanner in 1943 and Hans Asperger in 1944, conceptualization of autism spectrum disorders has shifted greatly. It is now evident that it is not a rare childhood disorder. Over the past three decades, billions of fundshave been invested in to researching andunderstanding the causes of autism spectrum disorders.  However, research to date has notproduceda single causal link but built a complex picture of associatedbiological, environmental and neurologicalcausalfactors. What has been confirmed through empirical research is there a number of genetic variations in individuals with autism (Abrahams and Geschwind, 2008), and neurological differences in how the brain develops (Courchesne, Carper at al. 2003).
 
It is also important to note that our general understanding of the brain and how it works is still limited, for instance recent research by the Human Connectone Project highlights just how little is still understand about the complex mechanisms of the human brain. It is therefore somewhat naïve to assume that the neurological difference reported is as simple as typical (non-autistic) versus atypical (autistic). The range of individual difference can vary so much across what is described as the autism spectrum, that a recurring phrase often used best encapsulates this, which is ‘when you’ve met one person with autism, you’ve met one person with autism’. There are such a variety of inter-connecting variables from genetics, cognition, environment, personality and other factors that carrying out research into causes has proven in some way futile.
 
However, this does not provide solace for many parents and families, particularly following a recent diagnosis. For parents seeking information on autism via the web, ityields a minefield of confusing, misleading and contradictory claims that it can be an exhausting emotional cocktail of uncertainty, despair and hope. 
 
The supposed 'epidemic'
The suggestion of an ‘autism epidemic’ rose to prominence in the 1990’s, alongside tenuous links that the cause was the MMR or other childhood vaccinations. Although these links have proven to be unfounded (Stehr-Green, Tull et al. 2003; Thompson, Price at al. 2007), the murmurings of epidemic and concerns of vaccinations have not yet faded. It may appear that there are increased numbers, however changes in our recognition, diagnosis, support and inclusive practices, genetics and societal views has shifted widely over the years that tracking back to ascertain whether there has been a rise in numbers is impossible. Steve Silberman, in his book ‘Neurotribes’, provides the most accurate examination of this reported phenomenon to date.
 
At present, diagnosis in the UK involves multi-disciplinary assessment and the use of interview and observation schedules (e.g. ADOS, ADI, DISCO, etc.) to assess for marked difference in social communication and interaction, and social imagination; based on DSM-V or ICD-10 criteria. Sensory needs are often commonly associated but not necessary in diagnostics. The National Autistic Society website report that there are currently 700,00 people in the UK on the autism spectrum. Although, this is probably not a true representation. To ascertain an accurate figure of numbers of individuals with autism continues to prove difficult.This is due to a number of reasons, for example changes in diagnostic criteria and inclusion criteria and terminology of prevalence studiesvaries when gathering data. For example, it is now becoming more widely recognised that the assumption autism affects four times more boys than girls is inaccurate. Judith Gould (Consultant Clinical Psychologist) and Sarah Hendrickx (adult and author with Asperger syndrome) report that autism presents differently in women and girls, and the most widely used diagnostic tools have not been designed to assess girls accurately. Meaning there is likely to be a whole cohort of women and girls missing from the prevalence data.In one of the London boroughs which I am based, figures are as high as 145 children diagnosed per year over the last 5 years (94 aged 2-5 years old, and 51 aged 5-18 years).
 
Support across the lifespan in the UK
So where have we got to in th UK? Although services have improved greatly, with early identification, better support and inclusive practices in schools and more access to training for teaching staff and professionals in education, health and social care. Across the UK, services remain inconsistent and patchy at best. The SEN CoP (2014) and Autism Act (2009) highlight how there is still a long way to go in reaching a consistent pathway of support across the lifespan. Recognition of executive function difference and weak central coherence differences; building on strengths and tapping into interests and motivations; and use of technology have improved inclusive educational practices. However, the so called 'epidemic' of children are already reaching adult services, and although much time has rightly been invested on early identification and intervention, it has been at the expense of developing support post secondary school. Beyondsecondary, adequate autism provision and support in further education, training and employmentis limited, and reportedly only 15% of autistic adults in the UK are currently in full-time paid employment (cited on www.auitsm.org.uk).
 
The concept of neurodiversity rose to prominence in the 1990s in the U.S.; it can be defined as naturally occurring cognitive variations with distinctivestrengths, which appear as a result of normal variations in the human genome. The autismneurodiversitymovement in the UK is growing in strength, to promote individuals with autism as valuable and contributing individuals in society. Autism understanding across the general public is changing, is appears to have moved away from the ‘rain man’ representation to a variety of representations reaching mainstream literature, theatre and screens (e.g. The Reason I Jump, The Curious Incident of the Dog in the Night-time, Temple Grandin’s biopic, Sheldon in ‘The Big Bang Theory’, etc.). Support or inclusion in the wider community is emerging by providing ‘autism friendly screenings’ in cinemas and theatre and Manchester airport has produced an autism specific booklet to download from their website. No doubt this is a result of parental organisations, self advocacy groups and charitable organisations raising awareness. However, for the general public ‘autism’ remains a mysterious condition, which many have heard of, however understanding does not usually extend beyond some vague notion of unusual social behaviours. 
 
Into the future
The question that keepsmostparents I work with up at night, and many siblings too, is ‘what willhappen when [parents] are no longer around?’ I am not the first to highlight that the billions of funds that goes to research in causes and even more concerning, to medical ‘cures’, needs to be redirected to provide on-going, improved and new interventions and support services that will make a real difference to the day to day lives of individuals with autism, and their families.
 
Although it is now largely accepted among parents and many professionals (i.e. teachers, psychologists, speech therapists) working closely with individuals with autism, that the most effective approach is to build on the strengths and interests; there seems to be a lack the processes and systems to fully enable this. When such provisions do exist, it is often only accessible to a limited few, available for a short period of time or under-resourced. There is an on-going need for training of educational staff (in early years, primary, secondary, college and university) and flexibility within educational systems to provide adequate and evidence based practices that are based on the individual needs of each child or young person with autism.
 
Awareness also needs to continue to be raised beyond educational provision to the wider community (police, hospitals, supermarkets, transport staff, service industry staff, criminal justice system, etc.) and employment market. If autism is less mysterious, there will be less fear of difference, less exclusion and more understanding and inclusion. If society can make the every day life ofindividuals with autism less disabling, allowing strengths and talents to develop,then who knows what wonderful things could arise from such a neurodiverse community.
 
Finally and most importantly, to properly plan for the fortune of autism we need to askpeople with autismwhat it is they need, andwe need to listen.
 
Dr Jennifer GreeneCPsychol, BSc, DECPsy
Chartered Educational & Child Psychologist, with an Autism Specialism.
 
Correspondence: Jennifer@drgreenepsychology.uk