Assessment & Diagnosis
Guidelines on ASD diagnosis & what you can expect as Good Practice during Assessment & Diagnosis
Below are some published recommended guidelines for the diagnosis of autism. You can read about the recommended diagnostic pathways (the procedure for assessment and diagnosis), the services and 'best practice' care you can expect to receive from the NHS professionals and clinicians involved in carrying out assessments for a diagnostic assessment of ASD.
Diagnosis of autism can only be provided by a Clinician such as a Psychologist, Psychiatrist or a Paediatrician.
As I am not a clinician, I am not able to carry out a diagnostic assessment or give a diagnosis but I can refer you to a private diagnostic clinician or a team who can.
I generally do not charge for signposting you to an assessment team or a speciialist clinician, private or otherwise but if I am required to write a referral or a report based on my own experience or observations from working with a child or adult then an admin charge or hourly rate will be discussed with you beforehand.
Recommended Guidelines for Best Practice for an Assessment & Diagnosis of ASD
These guidelines are written for you to to help you understand what you can expect from the NHS & Private organisations who offer ASD assessment and diagnosis.
click on any link below to read the online version
United Kingdom:
National Autism Plan for Children (NAPC) (2003) for England & Wales (NAS)
Supporting Adults with Autism: A Good Practice Guide for NHS and Local Authorities (NAS)
Scottish Intercollegiate Guidelines Network (SIGN) (2007)
New Scottish Guidelines on the diagnosis of autism in adults (2016)
Girls & Autism: Flying Under the Radar (NASEN)
*********Children & Families Act 2014 *********
Some other Countries:
American Academy of Paediatrics (AAP)
American Academy of Neurology (AAN)
New Zealand Autism Spectrum Disorder Guidelines Summary (2008)
Some notes and information on assessing and diagnosing Women and Girls on the Autism Spectrum
Pathological Demand Avoidance (PDA)
***A list of Bristol's Community Paediatric Clinicians can be found HERE. ***
If you are looking for a Private Assessment and Diagnosis, I can connect you with a private clinician who is based in Bristol and Harley Street, London or a multi-disciplinary team based in South Wales HERE
Please contact me for more information about this service.
For sign-posting information there is no charge.
The first 30 minutes of any initial contact to discuss your current circumstances is FREE.
Further time to discuss your personal circumstances in more detail and explore other aspects of living and succeeding in life with autism can be arranged at a mutually agreeable time and is charged at my hourly rate (minimum bookable is 1 hour at a cost of £70. More than one hour reduces the hourly rate to £65 per hour.
From experience, one hour is the very minimum time needed for an initial discussion about your needs and completion of a questionnaire is offered to provide the best consultation, to save time, help prioritise what you want to cover during your consultation and give you value for money. A full initial consultation is 3 hours and takes place in your home environment.
I have experience in supporting people who are blind, unable to read, write and verbally communicate well and I am always willing to find a way to work through and beyond this with you, so please contact me in the best way you can to discuss this with me.
How Clinicians diagnose Autism Spectrum Disorders (ASD)
Easy read version
The word ‘diagnosis’ is defined in the British Medical Association, Illustrated Medical Dictionary as,
‘the process of finding the nature of a disorder. The doctor listens to the patient’s account of his or her illness and a physical examination is usually involved. Tests may be ordered after the formation of a provisional diagnosis'
The diagnosis and classification of any disease or disorder is a foundation for research, treatment and intervention. The clinician carries out a series of investigations in order to understand the nature and possible causes of a person’s difficulties with the intention of making them well again. A useful diagnosis will also suggest methods and treatments for the person's recovery.
It is well recognised that autism is the consequences of several organic causes, and is a biologically based, neurodevelopmental (brain development) disorder with a strong genetic component. Despite this, there are no biological tests for its diagnosis and its identification relies on the descriptions of social and other behaviours, until such time any biological indicators are found. This can be considered a poor guide for giving a child a diagnosis of a life long condition as no one set of behaviours defines autism, and certain missing behaviours could be a better indication of it. ‘Autistic behaviours’ are seen in everyone, albeit at stressful times or in isolation, and behaviours vary depending on whether the person is familiar with the environment and what stimuli is present, which can also be a hindrance for making a diagnosis. Therefore, assessments should be conducted in more than one setting to compensate for this and allow the clinician to have a full insight in to the individual's behaviours in different settings.
Diagnosing ASD is a very complex procedure because additional disabilities can also be present, which can complicate diagnosis further and sometimes cause misdiagnoses. Diagnosis is made by a clinician with the aid of interview and observation 'instruments' (questionnaires, interviews and observation of behaviour guidelines) and there are numerous national recommended guidelines for referrals, screenings and assessments known as the ‘diagnostic pathway.' They are created specifically by and for various countries and even differ between regions. In England and Wales there is the National Autism Plan for Children (NAPC) guidelines & Supporting Adults with Autism: A Good Practice Guide for NHS and Local Authorities, for Scotland there are Scottish Intercollegiate Guidelines Network (SIGN). Others include the American Academy of Paediatrics (AAP), the American Academy of Neurology (AAN) and the New Zealand Autism Spectrum Disorder Guidelines Summary. The National Institute for Health and Clinical Excellence (NICE) in the UK are in the process of publishing new guidelines for the diagnosis of ASD (NICE, 2009).
Some guidelines include recommendations for which instruments are to be used and some are not so specific but all the guidelines use evidence based practice and research to form the guidelines within them. The New Zealand Guidelines highlight the need for cultural differences to be considered and for the establishment of a baseline criteria for the “norm” of a population. Some cultures have very different beliefs and ideas to others about the acceptance and treatment of disabilities such as autism, mental illness and depression and these will be reflected in their guidelines. As the UK & USA are so multicultural, cultural differences and understandings withiin the families they are working for should also be considered by professionals during the process of assessment and diagnosis.
Pathological Demand Avoidance (PDA)
PDA is increasingly being recognised as part of the autism spectrum. I originally became aware of this condition when I attended one of Elizabeth Newson's conferences back in the early years of my daughter's infant education. I was lucky to have a very supportive 'Autism Specialist Teacher' from the Bristol Autism Outreach Team, as it is called now, who supported me beyond her remit (in my opinion) and attended conferences and anything we could hear or find out about to learn more to help us as a family. You can download a copy of the 'defining criteria for PDA' from the Autism East Midlands Elizabeth Newson Centre HERE.
However, here are the main features of PDA:
- Obsessively resisting ordinary demands
- Appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
- Excessive mood swings, often switching suddenly
- Comfortable (sometimes to an extreme extent) in role play and pretending
- Language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
- Obsessive behaviour, often focused on people rather than things (PDA Society, 2017).
AS PDA is not recognised as a specific, stand alone diagnosis and is not listed in the diagnositic manuals, it is not helpful from an intervention, therapy or treatment point of view because the same type of interventions, therapies and treatments that are useful for people with autism do not work for people with PDA. Therefore, it is highly preferable to seek an assessment for ASD with PDA as part of that diagnosis. This will enable professionals such as teachers and therapists who are not aware of this to find more appropriate training for understanding how to support a person or family with this very challenging addition to their circumstances.
Some notes on Women and Girls on the Spectrum...
Women and Girls are becoming increasingly more recognised and diagnosed with autism but this is a 'new concept' because until recent years, the assessment and diagnosis of autism spectrum conditions (ASC) are biased towards the many years of understanding of how autistic behaviours are be recognised in boys. My daughter was diagnosed by a multi-disciplinary NHS team at the age of two under these 'male-related' behaviours. She was non-verbally communicative and ticked all the boxes for 'classic or Kanners autism' in the diagnositic manuals ICD-10 and DSM-IV and it is only through her receiving a multi-faceted, holistic intervention and therapy regime over many years that she is now able to function at univeristy level with support. She also received a diagnosis of Dyslexia at age 18 but this was only because her educational and social communication needs were such at this point, that she was reassessed by a highly qualified and experienced Educational Psychologist who was able to define her complex development and learning profile and prepare a comprehensive and indepth assessment report to enable her to further progress in education with the specialist support recommended, to empower her.
There are no specific guidelines available at the time of writing this for the assessment and diagnosis of women and girls on the autism spectrum but I have found Girls & Autism: Flying Under the Radar written by the National Association of Special Educational Needs (NASEN) which discusses the differences in autism behaviour presentations between boys and girls to enable you recognise the signs and symptoms you may see in women and girls. You can down load this HERE.
Fred Volkmar (2005) states,
‘autism is probably the complex psychiatric or developmental disorder with the best empirically based, cross-national diagnostic criteria.’
Autism and the other subgroups of the disorder are categorised under 'Pervasive Development Disorders' (PDD) but Autistic Spectrum Disorder (ASD) is not a category under ‘Pervasive Development Disorder’ (PDD) in either of the two internationally recognised diagnostic manuals, the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) compiled and published by the American Psychiatric Association (APA) in 1994 and revised in the year 2000 and the International Classification of Diseases: classification of Mental and Behavioural disorders, tenth edition (ICD-10) compiled and published by the World Health Organisation (WHO) in 1992. However, ASD is used as an ‘umbrella term’ by professionals ‘to reflect the current level of knowledge and degree of certainty in the different syndromes.'
Asperger Disorder (AD), as it is called in the ‘text revised’ edition of the DSM-IV diagnostic manual, the (DSM-IV-TR) published in the year 2000, is placed at the higher functioning end of the autistic spectrum and is called ‘Asperger Syndrome’ (AS) in the ICD-10. High functioning Autism (HFA), not categorised in the DSM-IV or ICD-10, is also at the more able end of the spectrum and a definition between the two can be made by the person’s IQ and the age of the onset of the disorder which refers to language delay in relation to typical language development. However, some professionals, such as Tony Attwood, disagree with the age of ‘typical’ language development stated in the DSM-IV-TR and ICD-10 which is what decides between the two diagnoses. A diagnosis or 'label' of High Functioning Autism (HFA) is usually used to describe an individual who was originally diagnosed with autism due to language delay at age three who has made such gains in progress they are considered to be as 'able functioning' as an individual with Asperger syndrome. However, a person with HFA may still have learning difficulties and have developed coping strategies for the more complex impairments which may still accompany them from their original diagnosis of autism.
NB. The DSM is now in its fifth edition and no longer considers Asperger syndrome as a disorder. Instead, children and adults are being given the diagnostic description of Autism Spectrum Disorder.
ASD can only be diagnosed by an experienced psychiatrist, paediatrician or clinical psychologist in the UK and clinical expertise constitutes the diagnostic ‘gold standard’ (the best), especially in younger children. Clinicians can choose to use the DSM-IV or the ICD-10 and both are used by most countries worldwide, except for a few such as France and Greece, which have their own diagnostic manuals. The DSM-IV is used by most clinicians and insurance companies in the United States and is the basis for all psychiatric classification and diagnoses. One criticism of the DSM-IV is that there are no separate categories or criteria for the diagnosis of children and some critics are concerned that because in the USA, diagnosis of ASD is required for insurance purposes, using an edition of the DSM-IV which is not specific to a child’s typical behaviours, could cause children to be diagnosed with a serious condition prematurely. The American Psychiatric Association updates the DSM approximately every ten years after a systematic, comprehensive review of the psychiatric literature, and contains the most up-to-date information available to assist the clinician in making a differential diagnosis (a diagnosis which has considered all the possibilities of others which are similar). The continual updating of versions of the diagnostic manuals has altered diagnostic criteria considerably for the diagnosis of autism and other PDDs over the years, making specific subgroups either less or more inclusive of certain criteria which could change the 'diagnosis' a person was originally given if reassessed.
DSM-IV (1994) had a crucial error in it under the Pervasive Development Disorder–Not Otherwise Specified (PDD-NOS) category. The error changed the meaning of impairment in ‘reciprocal social interaction’ and ‘communication skills’ because of a typing error where the word ‘or’ had been typed instead of ‘and.' This made it a much weaker and more inclusive tool for individuals when used to diagnose (PDD-NOS) as they will be included under this diagnosis when only displaying one not both of these impairments. The error was corrected in the later ‘text revised’ version, the (DSM-IV-TR).
This makes any research for which the (1994) DSM-IV manual has been used to diagnose participants with PDD-NOS and any diagnosis given for PDD-NOS between 1994 and 2000, unstable and it is not known whether the correction in the year 2000 text-revised version, the DSM-IV-TR, has been noted by clinicians who could still be making diagnostic decisions based on the 1994 criteria. The ICD-10 does not have a category PDD-NOS but has ‘Atypical Autism’ which is also in the DSM-IV but under PDD-NOS! (Not too confusing then!..ü) In 2005, Lorna Wing acknowledged the correction in the DSM-IV-TR for PDD-NOS but suggests that the ‘or...or’ format in the ICD-10 for atypical autism should have also been altered. The DSM-IV and ICD-10 descriptions for PDDs vary considerably which creates a question over the consistency of autism spectrum diagnoses and Fredrick Volkmar's previously mentioned statement of there being a 'cross-national diagnostic criteria' for them.
There is now a DSM-5 and Asperger Syndrome has been removed and is now diagnosed under the term 'Autism Spectrum Disorder (ASD).
There are many assessment tools, each with their own strengths and weaknesses. They identify any one or all of the triad of impairments in autism as well as typical behaviour development. Again, professionals can choose which tools to use but each one requires various amounts of training and care should be taken to choose the most appropriate. Some are interviews, others are observations. The two main diagnostic instruments used for the assessment of autism are the Autism Diagnostic Interview–Revised (ADI-R) and the Autism Diagnostic Observation Schedule- Generic (ADOS-G). The ADOS-G is referred to by many clinicians as the ADOS. The ADI-R, one of the major psychological tools used for diagnosis, was specifically linked to the DSM-IV and ICD-10 criteria and was designed to identify children and adults with a diagnosis of autism or PDD.
The ADI-R and the ADOS are considered the ‘gold standard’ (the best) tools in diagnosis although, Professor Simon Baron-Cohen points out in his book that they are not, unless combined with clinical opinion. These two tools have not been able to replace the clinician’s expert judgement, as was first hoped. Both have two uses, research and clinical diagnosis. The ADI-R is an interview and the ADOS is an observational, play based instrument. The ADI-R and ADOS are expensive to administer and require specialist training to conduct although the training is mainly required for research not clinical use.
Another diagnostic interview is the Diagnostic Interview for Social and Communication Disorders (DISCO). It is a very diverse and informative tool as it covers all the relevant developmental areas of autism, including: social interaction, communication, imagination and repetitive activities. It assesses developmental levels in many areas and has a section on atypical behaviours not specific to autism including sensory stimuli, attention difficulties, activity levels, challenging behaviours and other psychiatric disorders. It helps to identify other disorders and disabilities and can be used for any developmental age showing a whole picture of the persona. Professor Sue Leekam et al., (2007) used the DISCO in one of her research investigations to measure patterns of sensory abnormalities and it confirmed a very high percentage (over 90 percent) of children and adults of all ages and abilities with ASD do have abnormal sensory experiences. The DISCO has been found to be a reliable instrument for ASD diagnosis when the whole interview is used, particularly for diagnosing disorders of the wider autistic spectrum. It has also been shown to have high inter-rater reliability (Wing et al., 2002). However, a possible bias towards these results is that Lorna Wing, the author of the DISCO, was a team member of each of the above studies.
The word ‘diagnosis’ is defined in the British Medical Association (BMA), Illustrated Medical Dictionary as,
‘the process of finding the nature of a disorder. The doctor listens to the patient’s account of his or her illness and a physical examination is usually involved. Tests may be ordered after the formation of a provisional diagnosis’ (BMA, 2008, p170).
Diagnosis and classification of any disease or disorder is a foundation for research and intervention. The clinician conducts a series of investigations in order to understand the nature and possible causes of a person’s difficulties with the intention of making them well again and a useful diagnosis will also suggest methods and treatments for the recovery (Volkmar et al., 2005; Branson et al., 2008).
It is well recognised that autism is the endpoint of several organic causes, and is a biologically based, neurodevelopmental disorder with a strong genetic component. Despite this, there remain no biological tests for its diagnosis and its identification relies on the descriptions of social and other behaviours, until such time any biological markers are found (Lord and Corsello, 2005; Volkmar and Klin, 2005; Baron-Cohen, 2008; Baird et al., 2003; Huws and Jones, 2008; Turkington and Anan, 2007; Le Couteur et al., 2003, NAS 2009). This may be considered a poor guide for giving a child a diagnosis of a life long condition as no one set of behaviours denotes autism, and certain missing behaviours could be a better indication of it (Le Couteur et al., 2003; Moore and Goodson, 2003). ‘Autistic behaviours’ are seen in everyone, albeit at stressful times or in isolation, and behaviours vary depending on environmental familiarity and stimuli, which can also be a hindrance for making a diagnosis. Therefore, there is a need to conduct assessments in more than one setting to compensate for this (Le Couteur et al., 2003; Coonrod and Stone, 2005).
Diagnosing ASD is a very complex procedure because additional disabilities can also be present, which can complicate diagnosis further and sometimes cause misdiagnoses (Le Couteur et al., 2003). Diagnosis is made by clinical judgement with the aid of interview and observation 'instruments' and there are numerous national recommended guidelines for referrals, screenings and assessments known as the ‘diagnostic pathway’ (Le Couteur et al., 2003; Scottish Intercollegiate Guidelines Network (SIGN), 2007; Filipek et al., 2000; Greenspan et al., 2008). They are created specifically by and for various countries and even differ between regions. In England and Wales there is the National Autism Plan for Children (NAPC) (Le Couteur et al., 2003) guidelines while Scotland has the Scottish Intercollegiate Guidelines Network (SIGN), 2007. Others include: American Academy of Paediatrics (AAP), 2008; American Academy of Neurology (AAN) and the Child Neurology Society (Filipek et al., 2000); New Zealand Autism Spectrum Disorder Guidelines Summary, 2008. The National Institute for Health and Clinical Excellence (NICE) in the UK are in the process of publishing new guidelines for the diagnosis of ASD (NICE, 2009).
Some guidelines include recommendations for the diagnostic instruments to be used and some are not so specific but all the guidelines use evidence based practice and research to form the guidelines within them. The New Zealand Guidelines highlight the need for cultural differences to be considered and for the establishment of a baseline criteria for the “norm” of a population. Some cultures have very different beliefs and ideas to others about the acceptance and treatment of disabilities such as autism, mental illness and depression (SIGN, 2007; Grinker, 2008; Le Couteur et al., 2003). As the UK & USA is so multicultural, cultural differences should also be considered by professionals during the process of investigating a possible diagnosis.
Volkmar states ‘autism is probably the complex psychiatric or developmental disorder with the best empirically based, cross-national diagnostic criteria’ (2005 p.5).
Autistic Spectrum Disorder was not a category classified under ‘Pervasive Development Disorder’ (PDD) in either of the two internationally recognised diagnostic manuals, the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) (American Psychiatric Association (APA), 1994 and 2000) and the International Classification of Diseases: classification of Mental and Behavioural disorders, tenth edition (ICD-10) (World Health Organisation (WHO), 1992). However, it is used as an ‘umbrella term’ by professionals ‘to reflect the current level of knowledge and degree of certainty in the different syndromes’ (Le Couteur et al., 2003).
Asperger Disorder (AD), as it is classified in the ‘text revised’ edition of the DSM-IV, the (DSM-IV-TR) (APA, 2000), is placed at the higher functioning end of the autistic spectrum and is called ‘Asperger Syndrome’ (AS) in the ICD-10 (WHO, 1992). High functioning Autism (HFA), not categorised in the DSM-IV or ICD-10, is also at the more able end of the spectrum and a definition between the two can be made by the person’s IQ and the age of onset of the disorder (Klin et al., 2000; Baron-Cohen, 2008; APA, 1994; WHO, 1992). However, some professionals disagree with the age of ‘typical’ language development stated in the DSM-IV-TR and ICD-10 which differentiates the two diagnoses (Attwood, 2004; Lewis et al., 2007).
NB. The DSM is now in its fifth edition and no longer considers Asperger syndrome as a disorder. Instead, children and adults are being given the diagnostic description of Autism Spectrum Disorder.
A diagnosis of High Functioning Autism (HFA) is usually given to an individual who was originally diagnosed with autism due to language delay at age three who has made such gains in progress they are considered to be as able as an individual with Asperger Syndrome. However, a person with HFA may still have learning difficulties and will most likely have learned coping strategies for the more complex impairments which may still accompany their diagnosis of autism (Attwood, 2004).
ASD can only be diagnosed by an experienced psychiatrist, paediatrician or clinical psychologist in the UK (Baron-Cohen, 2008). Clinical expertise constitutes the diagnostic ‘gold standard’, especially in younger children (Klin et al., 2000; Chawarska et al., 2007; (Charman and Baird, 2002; Lord, 1995; Volkmar, Chawarska and Klin, 2005 cited in Turner and Stone, 2007)). Clinicians can choose to use the DSM-IV or the ICD-10 (Ozonoff et al, 2005). Both are used by most countries worldwide, except for a few such as France and Greece, which have their own (Grinker, 2008). The DSM-IV is used by most clinicians and insurance companies in the United States and is the basis for all psychiatric classification (Turkington and Anan, 2007). One criticism of the DSM-IV is there are no separate categories or criteria for the diagnosis of children. Some critics are concerned that because in the USA, diagnosis of ASD is required for insurance purposes, using an edition of the DSM-IV which is not specific to a child’s typical behaviours, could cause children to be diagnosed with a serious condition prematurely (Turkington and Anan, 2007).
The APA updates the DSM approximately every decade after a systematic, comprehensive review of the psychiatric literature, and contains the most up-to-date information available to assist the clinician in making a differential diagnosis (Turkington and Anan, 2007; Volkmar et al., 2005). The consecutive updated versions of the diagnostic manuals have altered diagnostic criteria considerably for the diagnosis of autism and other PDDs over the years, making specific subgroups either less or more inclusive (Grinker, 2008; Wing, 2005).
DSM-IV (1994) had a crucial error in it, separating the categories ‘reciprocal social interaction’ and ‘communication skills’ with the word ‘or’ instead of ‘and’ in the Pervasive Development Disorder–Not Otherwise Specified (PDD-NOS) category. This made it a much weaker and more inclusive tool when used to diagnose (PDD-NOS). The error was corrected in the later ‘text revised’ version (DSM-IV-TR) (APA, 2000) (Grinker, 2008; APA, 1994; APA, 2000; Wing, 2005; Towbin, 2005; Skellern et al., 2005; Lathe, 2006).
However, this makes any research for which the (1994) DSM-IV manual has been used and any diagnoses given for PDD-NOS between 1994 and 2000, unstable and it is not known whether the correction in the year 2000 text-revised version, the DSM-IV-TR, has been noted by clinicians, who could still be making diagnostic decisions based on the 1994 criteria (Grinker, 2008). The ICD-10 does not have a category PDD-NOS but has ‘Atypical Autism’ which is included under PDD-NOS in the DSM-IV (APA, 1994; WHO, 1992). Wing (2005) acknowledges the correction in the DSM-IV-TR for PDD-NOS but suggests that the ‘or...or’ format in the ICD-10 for atypical autism should have also been altered. The DSM-IV and ICD-10 descriptions for PDDs vary considerably which creates a question over the consistency of autism spectrum diagnoses and Volkmar's previously mentioned statement of there being a 'cross-national diagnostic criteria' for it (Lathe, 2006; Wing, 2005).
There is now a DSM-5 which no longer has Asperger Syndrome as a criteria and Autism Spectrum Disorder is used (APA, 2012).
There are many assessment tools, each with strengths and weaknesses, identifying any one or all of the triad of impairments as well as typical behaviour development (Le Couteur 2003; Coonrod and Stone, 2005; Ozonoff et al., 2005). Again, professionals can choose which tools to use but each one requires various amounts of training and care should be taken to choose the most appropriate (Filipek et al, 1999). Some are interviews, others are observations. The two main diagnostic instruments for assessment of autism are the Autism Diagnostic Interview–Revised (ADI-R) (Lord et al, 1994 cited in Lord and Corsello, 2005) and the Autism Diagnostic Observation Schedule- Generic (ADOS-G) (Lord et al., 2000) (Le Couteur, 2003). The ADOS-G is still referred to as the ADOS (Chez, 2008; Turkington and Anan, 2007; Le Couteur, 2003; Lord and Corsello, 2005). The ADI-R, one of the major psychological tools used for diagnosis (Chez, 2008), was specifically linked to the DSM-IV and ICD-10 criteria and was designed to identify children and adults with a possible diagnosis of autism or PDD (Lord, et al., 1994 citied in Lord and Corsello, 2005).
The ADI-R and the ADOS are considered the ‘gold standard’ tools in diagnosis (Wing, 2005; Battaglia and Carey, 2006; Baron-Cohen, 2008; Chez, 2008; Luyster et al., 2009) although, Baron-Cohen (2008) points out that they are not, unless combined with clinical opinion. These tools have not been able to replace the clinician’s expert judgement, as first hoped (de Bildt et al., 2004). Both have two uses, research and clinical diagnosis (Ozonoff et al., 2005). The ADI-R is an interview conducted with the parent and the ADOS is an observational, play based instrument (Le Couteur, 2003). The ADI-R and ADOS are expensive to administer and require specialist training to conduct (Baron-Cohen, 2008; Chez, 2008; Ozonoff et al., 2005; de Bildt et al., 2004) although the training is mainly required for research not clinical use (Lord et al, 1994 cited in Ozonoff, et al., 2005; Chez, 2008).
Another diagnostic interview is the Diagnostic Interview for Social and Communication Disorders (DISCO) (Wing et al., 2002) (Le Couteur, 2003, NAS, 2009; Lord and Corsello, 2005). It is a very diverse and informative tool as it covers all the relevant developmental areas of autism, including: social interaction, communication, imagination and repetitive activities. It assesses developmental levels in many domains and has a section on atypical behaviours not specific to autism including sensory stimuli, attention difficulties, activity levels, challenging behaviours and other psychiatric disorders. It helps to identify other disorders and disabilities and can be used for any developmental age showing a whole picture of the persona (Lord and Corsello, 2005; Le Couteur, 2003). Leekam et al., (2007) used the DISCO to measure patterns of sensory abnormalities and confirmed a very high percentage (over 90 percent) of children and adults of all ages and abilities with ASD do have abnormal sensory experiences (Bogdashina, 2003; Williams, 2006; Lawson, 2000; Filipek et al., 1999). The DISCO has been found to be a reliable instrument for ASD diagnosis when the whole interview is used, particularly for diagnosing disorders of the broader autistic spectrum (Leekam et al., (2007). It has also been shown to have high inter-rater reliability (Wing et al., 2002). However, a possible bias is that Wing, the author of the DISCO, was a team member of each of the above studies(Leekam et al., 2007;Wing et al., 2002).
Some notes on Women and Girls on the Spectrum...
Women and Girls are becoming increasingly more recognised and diagnosed with autism but this is a 'new concept' because until recent years, the assessment and diagnosis of autism spectrum conditions (ASC) are biased towards the many years of understanding of how autistic behaviours are be recognised in boys. My daughter was diagnosed by a multi-disciplinary NHS team at the age of two under these 'male-related' behaviours. She was non-verbally communicative and ticked all the boxes for 'classic or Kanners autism' in the diagnositic manuals ICD-10 and DSM-IV and it is only through her receiving a multi-faceted, holistic intervention and therapy regime over many years that she is now able to function at univeristy level with support. She also received a diagnosis of Dyslexia at age 18 but this was only because her educational and social communication needs were such at this point, that she was reassessed by a highly qualified and experienced Educational Psychologist who was able to define her complex development and learning profile and prepare a comprehensive and indepth assessment report to enable her to further progress in education with the specialist support recommended, to empower her.
There are no specific guidelines available at the time of writing this for the assessment and diagnosis of women and girls on the autism spectrum but I have found Girls & Autism: Flying Under the Radar written by the National Association of Special Educational Needs (NASEN) which discusses the differences in autism behaviour presentations between boys and girls to enable you recognise the signs and symptoms you may see in women and girls. You can down load this HERE.
NB. My work has been through the computerised plagarising systems so, if you wish to use it, remember to reference it!
REFERENCES:
AMERICAN PSYCHIATRIC ASSOCIATION 1994. Diagnostic and statistical manual of mental disorders : DSM-IV . 4th edn. Washington DC: American Psychiatric Association.
AMERICAN PSYCHIATRIC ASSOCIATION 2000. Diagnostic and statistical manual of mental disorders : DSM-IV-TR . 4th rev edn. American Psychiatric Association Washington DC.
ATTWOOD, T. 2004. Tony Attwood presents Asperger's diagnostic assessment . Arlington, Tex.: Future Horizons.
BAIRD, G., CASS, H. and SLONIMS, V. 2003. Diagnosis of Autism, Clinical Review. British Medical Journal [Online journal], 327(30 August 2003), 488-489,490,491,492,493.
BARON-COHEN, S. 2008. Autism and Asperger Syndrome, the facts. . 1st edn edn. United States: Oxford University Press Inc., New York.
BATTAGLIA, A. and CAREY, J. 2006. Etiology Yield of Autistic Spectrum Disorders: A Prospective Study. American Journal of Medical Genetics Part C [Online journal], Semin.Med.Genet.(142C), 3-4-7.
BOGDASHINA, O. 2003. Sensory Perceptual Issues in Autism and Asperger Syndrome. 1st edn. London, UK: Jessica Kingsley.
BRANSON, D., VIGIL, D. and BINGHAM, A. 2008. Community Childcare Providers’ Role in the Early Detection of Autism Spectrum Disorders. Early Childhood Education Journal [Online journal], 35(6), 523-530.
BRITISH MEDICAL ASSOCIATION 2008. Illustrated Medical Dictionary. 3rd edn. London, UK: Dorling Kindersley.
CHAWARSKA, K., PAUL, R., KLIN, A., HANNIGEN, S., DICHTEL, L. and VOLKMAR, F. 2007. Parental Recognition of Developmental Problems in Toddlers with Autism Spectrum Disorders. Journal of Autism & Developmental Disorders [Online journal], 37(1), 62-72.
CHEZ, M. 2008. Autism and its Medical Management: A Guide for Parents and Professionals . 1 edn. London, UK: Jessica Kingsley.
COONROD, E. and STONE, W. 2005. Screening for Autism in Young Children. In: F. VOLKMAR, R. PAUL, A. KLIN and D. COHEN, eds, Handbook of Autism and Pervasive Developmental Disorders: vol : II. 3 edn. Hoboken, New Jersey: Wiley, pp. 707-708-729.
DE BILDT, A., SYTEMA, S., KETELAARS, C., KRAIJER, D., MULDER, E., VOLKMAR, F. and MINDERAA, R. 2004. Interrelationship Between Autism Diagnostic Observation Schedule-Generic (ADOS-G), Autism Diagnostic Interview-Revised (ADI-R), and the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) Classification in Children and Adolescents with.. Journal of Autism & Developmental Disorders [Online journal], 34(2), 129-137.
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