What's in a Label?
Autism Diagnosis Uncovered 
There are lots of different opinions regarding the benefits of an autism diagnosis. For those who have not been down this path before, it can be a confusing and worrying time. Consulting the internet or talking to others may leave you none the wiser. So, what’s it all about?
Why diagnose?
You may feel nervous about pursuing a diagnosis for yourself or someone you know. After all, will it make any difference? What will others say? Will it change people’s perceptions? What if the clinicians get it wrong? What if I don’t get a diagnosis? Will it affect job prospects?
These are normal and valid concerns. There are, however, many positive reasons for knowing whether a diagnosis of Autistic Spectrum Disorder (ASD) is applicable to you or someone you know.
Misinterpretation
Behaviours associated with ASD can be easily misinterpreted. Teachers or colleagues may, for example, assume that the person is being deliberately obstructive, argumentative or rude. The truth is in fact, usually quite the opposite. Problematic behaviours in autistic individuals are rarely intentional. Knowing the underlying reason for the behaviour is likely to make people more tolerant and accepting of difference.
Autistic individuals often carry emotional pain because they don’t understand why they get it wrong so regularly. As a result, they often assign negative qualities to themselves such as, “I’m stupid”, “I’m not a nice person” or “I’m a loser”.
Parents of autistic children may have been accused of poor parenting or even secretly wonder whether they are to blame.
A diagnosis provides an explanation for the difficulties which takes the responsibility away from the person or parents. Consequently, a diagnosis is often followed by a sense of relief to the individuals concerned.
Signpost
A diagnosis provides a signpost to the kind of support structures that would be most helpful. There are many strategies that have been developed as well as services that cater specifically for autistic individuals. Clarity on the diagnosis focuses you on the areas where you are most likely to find the support you need.
The Assessment
There are several online assessments which can guide you with regards to the behavioural features of ASD. A diagnosis should, however, always be sought from a clinician with experience and expertise in the field.
An ASD diagnosis is based on observed behaviours. There is no blood test or scan which can confirm or exclude autism. Clinicians obtain the relevant information through a background history of the person from birth and an assessment of current functioning. Knowledge of other developmental conditions is necessary so that correct conclusions are drawn.
ICD 10 and DSM V are the British and American standardised diagnostic systems that list the key criteria for diagnosis. In the UK, the current gold standard assessment tools for gathering this information include the Autism Diagnostic Interview Revised (ADI-R) and the Autism Diagnostic Observation Schedule 2 (ADOS-2). These tools are used to obtain the developmental history (ADI-R) and to assess current abilities (ADOS-2).
There are other instruments (including checklists and questionnaires) but they vary in terms of their reliability. Information should also be gathered from other sources such as school, college, university or the work place to ensure a holistic picture of the individual.
The assessment is detailed and the process takes a few hours to complete. Some services will perform this on the same day whilst others will offer multiple appointments. UK NICE (National Institute for Health and Care Excellence) guidelines recommend a multidisciplinary team.
It may also be appropriate to assess other areas such as cognitive, language and motor skills. This information may not be needed for the diagnosis but it provides details about personal strengths and weaknesses. This helps with understanding and supporting the person in a focused manner.
Labels
The DSM-V contains the revised criteria for a diagnosis of ASD. In the past, there were different diagnostic categories including Autism, Asperger’s Syndrome, Atypical Autism and PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). These have been replaced by the singular term – Autism Spectrum Disorder. This gets rid of differences in the way that diagnostic terms are used and also facilitates consistency in global research.
ASD is heterogeneous meaning there is considerable variation in the presentation. Intelligence, for example, may vary from severe learning disability to very high functioning. Some people have associated behavioural problems whilst others are extremely compliant. Some are very socially awkward whilst others can effectively mask these difficulties in many situations.
The variation means that interpretation and understanding will also vary. A comprehensive assessment of strengths and weaknesses is therefore very helpful as it provides information for educators and employers which may not be immediately obvious.
Many individuals continue to use the term Asperger’s Syndrome as they feel that this more accurately captures their difficulties. Asperger’s has sometimes been described as mild autism because the behaviours are less deviant than those in core autism. The term “mild” can, however, be very misleading as the impact on the individual may be enormous. An individual with high levels of social anxiety, for example, can experience considerable stress affecting all areas of life.
The ADI-R includes a severity rating which refers to the amount of anticipated support that the individual will require.
Associated Conditions
Certain conditions commonly co-exist with ASD and further assessment should be carried out if any of these are indicated. Motor incoordination (dyspraxia), Attention Deficit and Hyperactivity Disorder (ADHD), Language disorder, mood disorder (e.g. depression, anxiety), epilepsy and sleep problems amongst others are commonly seen in autistic people.
If you are concerned about these or any other areas, speak to your clinician who can assess or refer for further investigation.
The process
If you would like to be assessed for possible ASD, start by researching services in your area. In the UK, the National Autistic Society has information about services across the country. These services include government funded as well as private services. Waiting times vary considerably.
It is advisable to contact the service before asking for an appointment so that you can find out more about their experience and expertise.
Some places will accept a self-referral but others require a letter from your GP or Consultant.
If you are turned down for an assessment, you can always ask to be seen by a different service or, if there isn’t a service in your area, you can ask for an “out of county” referral (UK residents). If you disagree with the outcome of the diagnostic assessment, then ask for a second opinion with a different clinician (in the same service or elsewhere).
Post Diagnosis Support
There are many different emotional reactions to a diagnosis of ASD and you may have a lot of questions. Some services offer support after the diagnosis whilst others do not.
If the service you have engaged with does not offer further support, this can be accessed via many different avenues. In the UK, the National Autistic Society (http://www.autism.org.uk/) has a helpline (Tel: 0808 800 4104) and also, local branches which provide information, training and services. There are many online communities as well as services which provide support after the diagnosis.
