Empowering Autistic Girls and Women

How is Autism Diagnosed

 A diagnosis is essential for children as it allows the correct support to put in place and the earlier a diagnosis can be obtained the better .The 3 main professionals who can help are Psychiatrists, Clinical Psychologists or Pediatricians.
 

Self-Diagnosis 

A growing number of adults are beginning to self-recognise that they may have an ASC and they are happy with self-diagnosis and simply embrace their autism and feel like this is their personality, self-identification allows these individuals to understand their strengths and weaknesses better to avoid getting stressed. Others are more severely affected by their autism and feel that a diagnosis would help them move forward in their life.

Seeking Adult Diagnosis 

Many people reach middle age and older without ever getting a formal diagnosis of their Autism, often this is due to the fact that Autism was just not recognised when they were children and Autism may not have been fully understood by the professionals that the individual has come into contact with.

For many adults receiving a formal diagnosis can be a positive experience and help them to understand why they have had difficulties in their life and help them to learn new strategy’s to overcome their difficulties. Allowing them to reach a level of self-understanding and acceptance. It can also help them to embrace their strengths and gifts that they may have kept hidden .

Getting a diagnosis as a women can be difficult as research has only recently begun into Autism in women .Many do a remarkable job of masking their difficulty’s and mimicking others which enables them to interact socially, they develop ways to function in a world that doesn’t make sense to them, which they find exhausting, social behavior is not natural to them and doesn’t come intuitively. Adult females with an ASC may be referred for or seek a diagnosis after receiving the diagnosis of other mental health issues .

You can request an NHS assessment through your GP to someone who specialises in adults with autism. There may be a long waiting list and some people prefer to pay for a private assessment. Some people have had to go through the NHS assessment process after they have received a private diagnosis to make it easier to access support .

A lot of GPs are very understanding, but very few have an in-depth knowledge of autism some will not refer for an assessment unless the Autism is having a severe effect on your level of functioning etc. Many women are frustrated by the lack of knowledge and understanding that they receive from GPs and other NHS Services and the diagnosis process can still be a post code lottery .

If you are already been seen by psychologist or psychiatrist you could ask them to refer you for a diagnosis

In some areas there are no diagnostic or support systems in place for Autistic adults and some GPs are reluctant to refer out of area .You are within your rights to approach your Primary Care Trust in writing and ask them to fund your diagnosis .There is a template letter to use at the bottom of the page

In some places you can only access the diagnostics pathway if you have a learning disability or a co-morbid mental health difficulty

It’s really important that you are referred to the right person, or service, first time round.

You are more likely to be accurately assessed, and will avoid having to go back to your GP to ask for a second referral. It can sometimes be hard to find a service or professional with experience of diagnosing autism in adults. 

You can search for diagnostic services in your area online at www.autism_org.uk_/directory (print details Out and take them with you), or by calling our Autism Helpline, who can search for you. Tel: 0808 800 4104 (open Monday –Friday 10am -4pm), calls are free from landlines and most mobiles NAS 

Preparing to Request a Diagnosis 

  • Research local diagnostics services.

Seek advice from a service such as the National Autistic Society or contact the NHS for a list of psychologists/services in your region. The NAS have a geographically list of diagnostics clinicians.

  • Make sure your diagnosis is the only thing you are seeing your GP about.
  • Find and do online tests print out along with a list of female traits .It can be a good idea to highlight the traits that relate to you with a highlighter pen

You’re Rights 

Firstly if your GP refuses you a diagnosis ask for the reason why, it is a good idea to do this in writing and to request a written reply .

  • You have a right to approach your Primary Care Trust for an out of area diagnosis
  • You have a right to request a second opinion
  • You can also follow the complaints procedure if you feel that guidelines have not been followed 

To get advice about a diagnosis for you or a family member contact

National Autistic Society Family Services Development Project Tel: 0161 9984667.


Approaching the Subject with your GP 

Do some of the online tests and print out with the results to take with you

The Autism Research Centre have downloadable tests available .

Make a double appointment so you have plenty of time to talk.

Explain that you feel that you experience some of the difficulties that people with autism face, and you would like to seek a formal diagnosis to be sure.

You need to clearly present your reasons for wanting a diagnosis so you will have to explain why you think you could have autism, and how a diagnosis would benefit you.

Benefits of a Diagnosis 

  • If you are having difficulties or have care needs a diagnosis may help you access support
  • Stops the need to have to explain your complex difficulty’s repeatedly
  • To explain difference, struggles and difficulty’s
  • Appropriate accommodations at school, College University or work

Relevant Information 

  • Childhood Development history very important so as detailed as possible
  • Childhood difficulties.
  • Co morbidity’s Anxiety Depression etc.
  • Problems with relationships, employment, and substance abuse finance or family
  • Sensory Difficulty’s

The Diagnostic Procedures 

You will usually be sent somewhere in your local area to be diagnosed (You will go to a place where the diagnostician works, for example a clinic or an assessment centre) You can be referred to a service outside your area, but as this costs far more funding may be refused .Adults may be seen by a psychiatrist or a clinical psychologist, or a team of diagnostic clinicians that have an in-depth knowledge of autism. Diagnosis can take many months with the wait for appointment very long in some areas. You can take someone with you to your diagnosis  to support you

The first stage is screening, an easy-to-use, general method that identifies a potential risk for developing ASD. These screening tests are available on line and are helpful to print out when you go to see your GP.

There is no defined procedure for conducting a diagnostic assessment, procedures vary dependant on your local authority’s procedure and also the person who is diagnosing you .

Autism is diagnosed through the use of diagnostic interviews to ascertain the level of social and communication problems and an in depth psychological assessment You will answer some questions about yourself and your developmental history, for example language, play and cognitive skills .Sometimes your parents may need to be involved too, to answer questions about what you were like as a young child.

A diagnosis does not include a medical examination

Previous assessments and diagnosis will also be taken into consideration, this should include physical and mental conditions.

Although there isn’t one standard way for an assessment to be carried out, there are guidelines that professionals should be following such as those issued by the National Institute for Health and Clinical Excellence (NICE).

NICE Clinical Guidelines apply in England and Wales but may also be taken up in Northern Ireland after being reviewed. NICE Clinical guidelines have no formal status in Scotland. 

Will I get a diagnosis on the day? 

The diagnostician will write up a report that they send to you in the post.

Some may call you first to tell you their diagnosis and explain their report .Then they will send you the report.

Diagnostic reports can be difficult to read and understand in places.

Ask the diagnostician to talk through any parts of the report that you aren’t clear about. 

Additional help 

Some diagnosticians offer follow-up services after diagnosis and can answer your questions and point you towards support services. Not all diagnosticians do this.

Support does not automatically follow diagnosis, support for Autistic Adults is limited in many areas and often services are only provided for those with a lower IQ but having a formal diagnosis means that you are more likely to be able to access services if they exist and claim any benefits you are entitled to. There are many on line support groups which can help make sense of what a newly diagnosed person may be experiencing.

What happens if I don’t agree with the diagnosis? 

You may get told that you do not have autism. If you feel this is wrong you can seek a second opinion, this is your right under the NHS Patients Charter. Tell your GP that you aren’t happy with your diagnosis and ask if your GP will refer you elsewhere or you can pay for a private diagnosis, remember that it may reach the same conclusion as your first diagnosis.

NHS Information line 0800 665544 for advice.

Counselling 

You may want to see a counsellor once a diagnosis is given to help resolve feelings and define issues that may need to be worked out.

Diagnosis can have a big impact on a person’s self-esteem and self- image. It can be a time of very mixed feelings


 

 Tools Used to Diagnose Autism 

3di Developmental, Dimensional and Diagnostic Interview

Autism is a diagnostic spectrum of variable severity, with significant co-morbidity.

No other existing standardized interview measures autistic features dimensionally.

This diagnostic test was  developed as  a parental autism interview that could be administered to measure both symptom intensity and co-morbidity across the full range of the autistic spectrum.

3di key features:

  • computes the severity of features associated with a diagnosis of autism
  • computes levels of behavioural adjustment
  • establishes comorbidity across the full range of child psychiatric disorders
  • allows an assessment for autism in as little as 45 minutes
  • generates a comprehensive report suitable for parents and referrers
  • liked by parents
  • excellent reliability and validity; criterion validity established in relation to the ADI-R
  • no double-entry: for research, all data can be exported to SPSS
  • provides an audit trail invaluable for clinical governance

DISCO

The DISCO is a series of questions about your developmental history As it asks about your childhood .Parents may need to be involved to answer some of the questions .

Sometimes you may not want your parents involved or they may have passed away ,in these cases siblings or another person who has known you since childhood can take part in the assessment instead .

Autistic Spectrum Quotient 

The autistic spectrum quotient is a set of fifty questions which analyse your level of social skills, attention switching, and attention to detail, communication difficulties and level of social imagination  

Autism Diagnostic Interview 

The Autism Diagnostic Interview-Revised (ADI-R) is a structured interview conducted with the parents of individuals who have been referred for the evaluation of possible autism or autism spectrum disorders. The interview, used by researchers and clinicians for decades, can be used for diagnostic purposes for anyone with a mental age of at least 18 months and measures behaviour in the areas of reciprocal social interaction, communication and language, and patterns of behaviour. 

Autism Diagnostic Observation Schedule 

The Autism Diagnostic Observation Schedule (ADOS) is an instrument for diagnosing and assessing autism. It was created by Catherine Lord, Ph.D., Michael Rutter, M.D., FRS, Pamela C. DiLavore, Ph.D., and Susan Risi, Ph.D. It consists of a series of structured and semi-structured tasks that involve social interaction between the examiner and the subject. The examiner observes and identifies segments of the subject’s behaviour and assigns these to predetermined observational categories. Categorized observations are subsequently combined to produce quantitative scores for analysis. Research-determined cut-offs identify the potential diagnosis of autism or related autism spectrum disorders, allowing a standardized assessment of autistic symptoms. 

CARS (Childhood Autism Rating Scale) 

Childhood Autism Rating Scale (CARS) is a behaviour rating scale intended to help diagnose autism. CARS was developed by Eric Schopler, Robert J. Reichier, and Barbara Rochen Renner. CARS was designed to help differentiate children with autism from those with other developmental delays, such as mental retardation.

Although there is no gold standard among rating scales in detecting autism, CARS is frequently used as part of the diagnostic process.

The National Autistic Society has a whole section on diagnosis and the assessment procedures 

The following letter is a template from the NAS for you to send to your local health authority if your GP tells you there is no diagnostic service in your area and refuses to refer you out of area


 

 

Chief Exec of the PCT

Address

 

Dear Chief Exec

 

From (Your address)

 

Date

 

Re- (Insert Your name or the name of your family member, their DOB and address)

 

I am writing to request funding for an assessment for diagnosis Of an Autism Spectrum Disorder. I feel that I (or my family member) may be on the autism spectrum

 

Following the passing Of the Autism Act 2009, the publication Of the Adult Autism Strategy and subsequent statutory guidance, each area has to develop a trusted diagnostic pathway and appoint a lead professional to develop a diagnostic and assessment service for adults with autism.

 

As no such pathway exists in my area I would like to request funding so that I can be referred to the nearest available service and also request that you inform the diagnostic lead that such a pathway should be developed as soon as possible.

 

Please note that a diagnosis of an Autism Spectrum Disorder can open doors to appropriate services to help me (or my family member) access education support, employment support  and welfare benefits as well as have a psychological benefit to explain why I (or they) may have had difficulties in the past.

To find out more about the adult autism strategy and statutory guidance and to make sure you are meeting your obligations under the Autism Act 2009, please visit http://www.autism.org uk/autism strategy.

 

1 look forward to hearing from you,

 

Yours Sincerely,

 

(Your narne)

 


 

Other people who may be able to assist with assessment for diagnosis:

Alternative routes to diagnosis

If someone is at Further Education College undiagnosed the Learning Support Section may pay for an educational psychologist assessment which may assist in the diagnosis.

If someone has a Disability Employment Adviser (DEA) he or she may arrange for the person to see an Occupational Psychologist (employed by the Regional Disability Employment Services) who may be able to offer advice about a diagnosis, or know who to refer on to.

There is a free diagnostic service based in London

Behavioral/Genetics Clinic

Tel.. 0203 228 4847


Dr Lorna Wing and Dr Judith Gould

Centre for Social and Communication Disorders

Elliot House

113 Masons Hill

Bromley

Kent BR2 gHT

Tel: 0208466000


Professor Pat Howlin

St Georges Hospital

London

Tel: 0208 7255604


Dr Meera Roy,

Birningham-based but sees adults from across the UK

Tel: 0121 255 8000


Vicky Bliss

The Missing Link

Clarks Cottage

Union Lane

Pilling

Preston PR3 6SS

Tel: 07971 569042

Email: vicky@missinglinksupportservices.co.uk


Hildegard Schakel offers a diagnostic service for adults (16* )

With suspected Asperger syndrome

Consultant Clinical Psychologist

PO Box 243

Manchester M21 gus

Telephone number: 07847 352412

Email: admin@schakel.co.uk


Mr. Barry G Holland

St Helen’s based

Consulting Psychologist in ASD

Telephone number: 0784 597 8760

Email: asdpsych@btinternet.com


Sheffield Asperger Syndrome Service

This is a national tertiary service provided by Professor Digby Tantam and Dr Sobhi Girgis that can accept referrals for ages from anywhere in England, Wales and Scotland.

Referrals must be made by a social worker, Community Psychiatric Nurse, Team manager or GP.

The referral must accompanied by a letter of authorisation from your local PCT stating that they are willing to pay the cost of the assessment

Contact:

Carol Salkeld, Service Administrator

Sheffield Care Trust,

St George’s Community Health Centre

Winter Street

Sheffield

Telephone number: 0114 271 6964

Dr Tantum also takes private referrals from GPs to his consultancy.

Details below.

Pat Watterson (For Professor Digby Tantam)

Administrator

Dilemma Consultancy

27 Brocco Bank

Sheffield Telephone number: 0114 266 0543

Email: administrator@dilemmas.org (launches email software)


Liverpool Asperger Team

Olive Mount Mansion

Old Mill Lane

Wavertree

Liverpool 15 8LW

Tel: 0151 737 4805

The team is able to diagnose and prepare a care plan for people outside Of the Merseyside area.

This is an NHS service and self-referrals can made but they need written confirmation from your PCT as regards funding for the assessment (Cost E2000).

 

Check the National Autistic Society’s Directory Of Services website for an up to date list of qualified clinicians who offer diagnostic service.


 Useful Books 

The complete guide to Aspergers syndrome, Tony Attwood 

Aspergers from the Inside Out, Michael John Carley.

 

 

 

 

 

 

 

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