Frequently Asked Questions

Who will be involved in my assessment?

What happens when I come for my screening assessment?

Do you use formal assessments?

Do you use informal assessments?

How do you determine if a diagnosis is given?

Does the person ‘have autism’ or are they ‘autistic’?

Autism Spectrum Disorder (ASD), Autism Spectrum Condition (ASC) or Autism?

Will a private assessment outcome and report be recognised as valid?

How does Everything Autism provide a Gold Standard Assessment according to NICE Guidelines?

The National Institute for Health and Care Excellence (NICE) outlines guidelines for all autism assessment teams to follow. Guidelines state core professionals who should always be part of the team. These professionals should be from a minimum of two differing professional backgrounds and have the skills, experience and competency to carry out an autism diagnostic assessment. Having professionals from differing backgrounds is essential to help explore ‘differential diagnosis’ (when a diagnosis of autism may not be the answer).

At Everything Autism, we are incredibly proud to have a team made up of Highly Specialist Speech & Language Therapists and Principal Psychologists. The team each have a minimum of 5 years experience working specifically within autism diagnostics. They are all trained and skilled in the administration of autism assessment tools and have done a large amount of additional training.  

Above all, our team have worked together over a number of years. This is something we place significant value on as we believe this ensures not only efficient and timely assessments but also assessments where clinicians are experienced in working together to confidently reach the correct outcome.

Prior to screening assessments, we always provide you with an accessible appointment letter which shows a picture of the building and the clinicians, and uses visual symbols to support understanding of who, where, when and what to expect.

This video also explains what to expect when you come for your assessment.

An autism assessment is made up of many components. These components can differ between each person as everyone is unique and there is no one ‘set’ way to carry out an assessment. An assessment is typically made up of both ‘formal’ and ‘informal’ components.

Formal assessments are pre-planned and have a set criterion for evaluation, meaning that results are standardised and measurable. Tests, questionnaires and surveys, such as the ADOS-2 and ADI-R, are examples of formal assessment. Informal assessments are content and performance driven. Informal assessment includes observations or activities including spontaneous play or conversation, where there is no standard criteria of evaluation.

At Everything Autism, we are trained in the delivery of a number of formal assessments which will be determined prior to your assessment and the most appropriate tool will be selected for each individual.

It is important to know that formal assessments make up part of the assessment and would never be used in isolation to determine an outcome. An autism assessment requires lots of differing parts which when considered together help to determine an outcome.

A very important part of an autism diagnosis is evidencing that the characteristics which define autism are seen across differing settings. It is therefore crucial that we gather information about a person in a different social setting. For children, this is most commonly school. For adults, we may find it beneficial to speak to an employer, colleague or friend.

We gather information in different ways and will always decide the best way to do this based on individual need. The most common ways of gathering information are;

• Sending a questionnaire to complete
• Speaking via phone or online platform
• Carrying out an observation visit in the setting
• A mixture of the above

We will also read and evaluate information from differing professionals and services who you may have already had involvement with e.g. health visitors, paediatricians, psychologists, portage services, social care.

Once all the assessment components are completed, the team who have been involved in the assessment will meet together. This is called a ‘multi disciplinary team’ meeting. They will look at all the evidence gained during the assessment and map this to the diagnostic framework to consider a diagnosis. The framework we use is called the DSMV and sets out specific criteria which must be met for a diagnosis to be given.

There are 3 outcomes possible from an assessment; the criteria is met and a diagnosis is given, the criteria is not met and no diagnosis is given or on rare occasions, an assessment can be inconclusive. It is important to know that regardless of outcome, you will always receive a detailed report which outlines the assessment components, gives the outcome and the rationale, provides a profile of the person’s current strengths and needs, and also provides recommendations.

Terminology around autism is a very hotly debated subject. For many in the autistic community, identity plays a very significant role and identity first language is preferred.

Identifying as ‘being autistic’ is widely accepted as the term of choice as this embraces autism as an identity first and foremost. The term ‘has autism’ is often disliked because it implies the person ‘has’ something additional (which may generate more negative connotations) whereas being ‘autistic’ is an inherent part of identity. It highlights ‘diversity’ and ‘difference’ over terms such as ‘difficulties’ or ‘disorder’. At Everything Autism, we use identity first language and in our written reports we will use identity-first language, i.e. “autistic person” rather than “person with autism” and “being autistic” rather than “having autism”.

Ultimately however this should always come down to personal preference and choice. We believe it is essential to ask the person and respect their personal choice.

Again, this is often a debated topic and can very much depend on the individual and their personal choice. The use of words such as ‘disorder’ and ‘condition’ however are being used much less as these words often have more negative connotations attached to them. They don’t mirror with the identity first language ‘I am autistic’ which is now much more commonly used. Words like ‘disorder’ and ‘condition’ can imply something is ‘wrong’ when diversity and difference should be wholly accepted and celebrated.

Whilst the autism diagnostic framework set out for clinicians to use is a medical model and uses terms such as ‘difficulties’ and ‘impairment’, we at Everything Autism much prefer to use the term ‘autism’ when providing an outcome instead of ‘ASD’ or ‘ASC’.

There can be concern from individuals or their families that a privately sought assessment will not be recognised as valid by their Local Authority or NHS, when individuals or their families then may try to seek recognition by their education or work places, apply for an Education and Health Care Plan (EHCP), apply to claim additional funding, or try to access appropriate support services (either privately or within the public sector).

If you are advised that a private assessment report or confirmed diagnosis will be disregarded, this is incorrect information.

NICE (National Institute for Health and Care Excellence) provide recommendations based on the most up to date evidence, and set quality standards on clinical guidelines for practitioners and services operating within the UK. Refusal by a Local Authority or the NHS to accept a private diagnosis of a Gold Standard assessment that follows NICE guidelines, suggests an omission in following clear and explicit requirements regarding equality and diversity regulations.

Furthermore, the SEN and Disability Code of Practice (2015) states;

“A diagnostic report written by registered, specialist trained, and experienced professionals, further to a comprehensive Autism Diagnostic Assessment process of a Gold Standard that meets or exceeds the guidelines set by NICE, will provide a diagnostic report that is diagnostically reliable, lawfully credible and clinically crucial as an NHS diagnostic report”. NHS England states, “you are still entitled to free NHS care if you choose to pay for additional private care, meaning that support services are also legitimately accessible.”

Therefore, a diagnosis of autism confirmed by a private autism diagnostic service outside of the NHS is legally bound to be recognised by other care and education providers, such as the NHS or Local Authorities, when it is clinically evidenced that the private assessment has met and exceeded the Gold Standard protocol outlined within NICE guidelines.

Crucially, there is no basis in law for a diagnosis to not be recognised as valid because it was privately obtained.

• Assessments include the use of Gold Standard tools like the ADOS-2 and the ADI-R.
• Assessments always include gathering information from a differing social setting with your consent e.g. school, work place, social club or group (this is done through liaison and/or direct observation).
• Assessments include the opinion of more than one clinician (Multi disciplinary).
• Assessments are completed by experienced and suitably qualified clinicians who understand Autism. All our clinicians are registered with their individual regulatory bodies which means there are clear professional standards they must adhere to when working with children, young people, adults and their families (you can check their professional registration by visiting the Health and Care Professional Council website).
• The expertise and skills of our team ensure that alternative explanations and differential diagnosis are always explored.

In summary, by choosing Everything Autism as your care provider you can be confident in knowing assessments are fully valid, credible and legally defensible. You will  receive an assessment by a team who understand autism and the various ways it presents. Your quality of care will be managed by highly skilled, compassionate and knowledgeable clinicians. You will receive a detailed report which evidences the reason for the team’s decision making however should further clarification be required, we can speak to agencies on your behalf.