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t: 08000 1999 18 | email: linda.philips@autismroutemap.com

Autism Routemap

  • Home
  • About
  • Who we work with
    • Who we work with
    • Diagnosis
    • Pre-School Children
    • Children
    • Adults
    • Women & Girls
  • FAQ
  • Blog
  • Contact
  • Online Services

Diagnosis for Autism

Getting a Diagnosis

Are you considering a diagnosis of ASD for yourself, a friend or a family member? Please read on for further information.

Why Diagnose?   

You may feel nervous about pursuing a diagnosis. After all, will it make any difference? What will others say? What if they get it wrong? What if I don’t get a diagnosis, then what? Will it affect job prospects?

These are all normal and valid concerns. There are, however, many positive reasons for knowing whether a diagnosis of 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 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 cannot understand why they get it wrong so often. They frequently attribute negative qualities to themselves such as “I’m stupid”, “I’m not a nice person” or “I’m a loser”. Similarly, parents of autistic children may have been accused of bad parenting by others or even themselves. A diagnosis provides an explanation for the difficulties which often brings a sense of relief to the individuals concerned.

Signpost

A diagnosis helps to signpost people to the kind of support that would be most helpful. There are many strategies and support structures that have been developed as well as services that cater for autistic individuals. Clarity on the diagnosis focuses you on the relevant areas to find the support structures that you need.

The Assessment

The Assessment

The Assessment

There are several online assessments which can guide you in terms of knowing the behavioural characteristics of ASD.  Accurate diagnoses 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 categorically confirm or exclude the presence of autism. It is therefore the remit of experienced clinicians to obtain the relevant information through a developmental history and an assessment of current functioning. Knowledge of other developmental conditions is necessary to ensure that the correct conclusions are reached.

ICD 10 and DSM V are the British and American standardised diagnostic systems that identify the key criteria for diagnosis. 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). There are various other instruments (including checklists and questionnaires) but the ADI-R and the ADOS-2 together enable a comprehensive assessment. Information should also be gathered from other sources such as school, college or work to ensure a complete perspective on the individual.

The assessment is detailed and the process can take a few hours to complete. Some services will perform this on the same day whilst others will offer multiple appointments. NICE guidelines recommend a multidisciplinary team.

In addition to assessment of social communication and interaction skills, it may also be appropriate to assess other areas of functioning such as cognitive, language and/or motor skills. Although this information may not be needed for diagnosis, it provides an holistic view of strengths and weaknesses which aids the management process.

Labels

Labels

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 labels have been replaced by the singular term – Autism Spectrum Disorder. This new simplified label eliminates differences in the way that diagnostic terms are used across regions and countries and, also facilitates consistency in global research.

ASD is a heterogeneous condition meaning that there is considerable variation in the presentation. Intellectual ability, for example, may vary from severally learning disabled to very high functioning. Some individuals have associated behavioural problems whilst others are highly compliant. Some display high levels of social incompetence whilst others can effectively mask these difficulties in many situations. The variation means that interpretation and understanding will also vary considerably and a comprehensive assessment of strengths and weaknesses is therefore very helpful when it comes to management.

Many individuals continue to use terms such as Asperger’s Syndrome as they feel that this more accurately captures the nature of their difficulties. Asperger’s has sometimes been described as mild autism because the behaviours are less deviant than those shown by individuals with core autism. The term “mild” can, however, be very misleading in that the impact on the individual may be very significant. An individual with high levels of social anxiety may 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.

Co-morbid and associated Conditions

Co-morbid and associated Conditions

Co-morbid and associated Conditions

Certain conditions commonly co-exist with ASD and it is therefore pertinent to consider further assessment should any of these be indicated. Many individuals may also have, for example, motor in-coordination (dyspraxia), Attention Deficit and Hyperactivity Disorder (ADHD), Language disorder, mood disorder (e.g. depression, anxiety), epilepsy and sleep problems amongst others.

If you are concerned about these or any other areas, they should be raised with your clinician who can assess further or refer on for additional investigations.

The process

The process

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. It is advisable to contact the service before initiating a referral so that you can find out more about their experience and expertise. Some places will accept a direct referral but others require referral via a GP or a Consultant in the case of Tertiary institutions. If you are turned down for an assessment, you can always ask for a referral to a different service or if there is no service in your area, then you can request an “out of county” referral (UK residents). If you disagree with the outcome of the diagnostic assessment, then you should ask for a second opinion with a different clinician. This can either be in the same service or in a different service.

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 post diagnosis support 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 post-diagnosis.

Please see the articles below for further helpful information.

 

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Further reading...

  • 10 Top Tips for Adults After Receiving a Diagnosis of Autism / ASD
  • 7 Top Tips for Moving Forwards After Your Child Receives an Autism Diagnosis
  • Sharing the Diagnosis with Your Child  
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