Introduction
As a private autism assessment service we speak to people considering a private route for autism diagnosis on a daily basis. We understand that many people are unsure about choosing a private assessment, and part of the concern is often related to whether a private assessment will be accepted by the NHS.
Growing NHS waiting lists drive many people to consider investing in a private assessment, with individuals in some areas being advised the wait for an NHS assessment is up to 5 years. Other reasons people consider a private autism assessment include difficulties obtaining a referral due to schools not recognising autistic characteristics, or struggling to be able to discuss their challenges with a GP.
Paying for a private autism assessment is a significant investment. In this article we outline what to expect from a private autism assessment, how to ensure that the NHS and other public bodies accept an autism assessment and also answer common questions about private autism assessments.
What is a private autism assessment?
A private autism assessment is simply an autism assessment that is undertaken outside of the NHS system. Some private health insurance packages cover the cost of private autism assessments, whilst others do not. Those without health insurance will need to fund the cost of a assessment themselves, or seek support from an employer, university or relevant charity to help with costs.
What are the benefits of using a private autism assessment service?
GP or school referrals are not required for a private autism assessment. Adults can self-refer, without the need to make a GP appointment to secure a referral. Parents / carers can refer their children for an autism assessment.
One of the benefits of commissioning a private autism assessment provider is not having to wait months or years to be seen and getting the outcome of the assessment shortly after it has been completed. Most private autism assessment services do not have waiting lists, meaning your assessment can be completed in a few weeks.
An assessment service that meets Gold standard expectations will allocate an assessment coordinator to every client. This means you will have a dedicated point of contact who will liaise with you regarding your assessment, answer any questions you have quickly and arrange appointments at times that suit you.
Private autism assessment providers will often offer a more personalised service. Your personal circumstances will be considered alongside your neurodivergence when planning your assessment, ensuring that your needs are met and that information is gathered in the most appropriate way.
What is the cost of a private autism assessment?
The cost of a private autism assessment can vary between £1,000 and £5,000, with the average cost being around £2,000.
Be aware that some private assessment companies use a ‘deposit and then payment’ model or an ‘initial assessment and then full assessment’ model which means the full price is not always clear. Ensure you are provided with a complete cost for a full autism assessment before commissioning a private autism assessment.
You can find more about the cost of our autism assessments and payment options here
Will the NHS accept a private autism assessment?
A private autism assessment will be accepted by the NHS, if the assessment has been completed in line with the National Institute of Clinical Excellence (NICE) Guidelines, and the information gathered is documented in a robust report that an experienced practitioner can review. If an assessment has not been completed to an appropriate standard or the standard of the assessment is not evidenced, local NHS teams may challenge the outcome of the assessment; it is therefore essential to choose an assessment service that will complete a gold standard assessment and provide the evidence needed to support a private autism diagnosis.
You can read more about NHS accepted private autism assessments here
What do NICE guidelines recommend?
The NICE guidelines relevant to autism assessments specify what information should be gathered as part of the assessment and how this should be gathered and reviewed.
NICE guidelines recommend that a multidisciplinary team complete autism assessments; that is, they should not be completed by a single professional or a single professional group.
They recommend processes such as having a coordinator as a single point of contact for individuals/families and ensuring that a feedback appointment is offered to answer any questions.
The guidelines specify that clinicians should be appropriately trained professionals. They state that the team should complete an observation as well as gather specific information about autistic characteristics and how they have impacted the individual presently and historically.
Will schools and employers accept a private autism diagnosis?
As long as an assessment has been completed by suitably qualified, registered and experienced clinicians, there is no legal difference in an autism diagnosis that has been issued by a private service to one that an NHS service has issued.
Schools and employers must accept a private autism diagnosis.
As mentioned above, a practitioner who is qualified and experienced in autism assessments, may challenge a private assessment that has not been completed to a suitable standard so it is important to ensure a private autism assessment is robust to prevent any challenge.
Can a private autism assessment be used as part of the EHCP process?
Yes, a private autism assessment can be used as part of the Education, Health and Care Plan (EHCP) process. The law that outlines the process for applying for an EHCP does not differentiate between a private or NHS obtained assessment report. A private autism diagnosis can be used to evidence a child’s special educational needs and the private autism assessment report can be used to provide evidence of adaptations and certain provisions that the child requires.
You can read more about using a private autism assessment in the EHCP process here.
Can I have a private autism assessment if we have had an NHS assessment and do not agree with the outcome?
Yes. Just as the NHS teams can challenge an autism assessment completed by another NHS team or a private provider, a private provider can reassess following an NHS assessment. Some NHS autism assessment processes are more robust than others, and NHS clinicians are varied in terms of their level of experience. An ethical private autism assessment provider should offer to review the existing NHS assessment report to determine whether a reassessment could yield a different outcome. If, for example, standardised assessment tools have been used, it is unlikely that repeating the assessment will change the outcome. However, if standardised tools have not been used, there may be missing information or the information gathered may have been misinterpreted, in which case a second opinion autism assessment may be beneficial.
What benefits will an autism diagnosis bring?
In our experience, the main benefit of an autism diagnosis for older children and adults is understanding themselves. Many older children and adults feel ‘different’ to their peers and understanding their differences can help them to accept their differences and utilise their strengths and talents.
Autism is best understood through the social model of disability. That is, most difficulties experienced by autistic people are a result of their environment or the way others interact with them. When a child or an adult has an autism diagnosis, employers and education settings have a legal duty to make reasonable adjustments to ensure that they are not disadvantaged because of their autism. This means that they must make adjustments to the environment and the way they interact, in order to reduce the autistic individuals difficulties.
You can read more about neurodivergence and the fit between a neurodivergent person and daily life in our article about neurodivergence here
An autism diagnosis can also help with other support, for example, a private autism diagnostic report can be utilized as part of the Education, Health and Care Needs Assessment process or as part of an EHCP review and can also be used to support applications for financial support, such as DLA, PIP or disabled students allowance.
What does a private autism assessment involve?
The Diagnostic and Statistical Manual – 5th Edition (DSM – 5) outlines the diagnostic criteria for diagnosis of autism spectrum disorder. The diagnostic criteria are essentially areas of difference that occur in a specific pattern in autistic individuals. An autism assessment therefore explores these areas of difference, looking at how they impact the individual now, and how they have impacted them in the past.
To gather the information needed for your private autism assessment, the team will plan the assessment according to the age of the person being assessed and their specific circumstances.
Regardless of age, the assessment team will need to observe the adult or child being assessed. For a gold-standard assessment, the team will use a standardized assessment tool called the Autism Diagnostic Observation Schedule—Second Edition (ADOS-2). The observation can usually take place online for those aged 10 and over; otherwise, it is completed in the clinic.
Information about a child’s history is gathered from parents or carers. Best practice is for the clinician to use an interview tool called the Autism Diagnostic Interview–Revised (ADI-R).
For adults, parents are often used as part of the assessment in the same way as children.
If an adult does not have a parent who can act as a suitable informant, an interview focusing on current and childhood behaviours is conducted with the client themselves. Tools such as the Autism Clinical Interview for Adults (ACIA) or Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R) are usually used to support this process.
For a child who attends an educational setting, information will also be gathered from their setting to inform the private autism assessment.
When all the required information has been gathered, the multidisciplinary team will review it and reach a clinical conclusion about whether the child or adult meets diagnostic criteria for autism.
A robust private autism assessment also considers differential diagnosis, which means the team will consider whether there could be another reason for the differences experienced or whether the individual could be experiencing autism alongside another condition.
You can read more about our autism assessment process here
Are online private autism assessments valid?
As mentioned previously the observational part of the autism assessment usually involves the use of the ADOS-2. The ADOS-2 has 5 different modules, the clinician selects which module to administer based on the individual’s age and level of language. Children and adults who are verbally fluent and no longer show interest in childhood play, can be assessed using a Module 4. Research shows that module 4 of the ADOS 2 can be administered through a video call with the same outcome as when administered in clinic.
Modules Toddler – 3 of the ADOS-2 involve shared play and activities and cannot be administered online. Therefore those who are aged 9 or younger or those who are not verbally fluent should be assessed in person.
What if I pay for a private assessment for my child and they do not engage?
It is important to choose a private autism assessment service with clinicians that are experienced in working with children. It is not unusual for autistic children to be reluctant to engage with unfamiliar adults, and experienced clinicians will be able to work around this.
When completing the observation of the child, the clinician will be looking at a range of behaviours, including how the child engages verbally and non-verbally with them and with their parents. They will also be observing for repetitive behaviours and unusual interests. Many of these characteristics of autism can be observed, even when the child will not directly engage with the clinician.
During the private autism assessment, the clinical team will also gather information from parents about how the child engages at home and when out and about socially and will seek information from the child’s education setting also.
All of the information gathered is considered alongside the child’s behaviour in the observational session.
How will masking and camouflaging impact a private autism assessment?
Masking and camouflaging are techniques employed by autistic children and adults to compensate for or hide their autistic differences. Masking and camouflaging behaviours are common in females but also observed in males.
The behaviours usually stem from the individual noticing that they are different from their peers or having others comment on their differences. Individuals who mask or camouflage begin to suppress certain behaviours when around others and copy or learn ‘pro-social’ behaviours to try to ‘fit in’.
For individuals who engage in high masking and camouflaging behaviours, it is important to choose an assessment service that is experienced in assessing this type of presentation.
Clinicians who are experienced in masking and camouflaging presentations will be able to spot nuances in social communication and interaction, such as the way gestures or eye contact are used. Those who mask and camouflage will often use verbal and nonverbal behaviours in a slightly different way, sometimes more repetitively, sometimes more exaggeratedly, and sometimes less frequently than neurotypical people. The clinician will also observe how coordinated verbal and nonverbal communication is.
Clinicians will also note when individuals suppress behaviours, such as holding their hands under a table to hide finger movements.
During a private autism assessment, skilled clinicians will also explore the use of camouflaging and masking behaviours during interviews and by using specific questionnaires, such as the Camoflauging Autistic Traits Questionnaire (CAT-Q).
You can read more about how masking and camouflaging are considered in a private autism assessment here
What are the signs of autism in females?
As mentioned above, autistic females are more likely to engage in camouflaging and masking behaviours. Females are thought to be more prosocial than males and more driven to try to fit in socially. The signs of autism tend to be slightly different for females, although some males do also engage in masking and camouflaging behaviours in the same way.
As autistic females often hide differences in social communication and interaction, it is the impact of masking and camouflaging that appears more obvious, often alongside sensory differences. How undiagnosed autism can impact females will vary from individual to individual but can include:
- Worries about or avoidance of meeting new people, visiting new places or engaging in new activities
- Difficulties managing friendships or only managing a small number of limited friendships
- Bouts of burnout which appear as cyclical periods of anxiety or depression
- Difficulties with regulating emotions, frequently losing temper, becoming upset or shutting down
- Frequent periods of exhaustion, especially after social interactions
- Irritation when things do not go to plan, when plans are changed or needing much reassurance about plans for the non-routine events
- Struggling with certain sounds, smells, light, taste and textures or feeling overwhelmed in environments with lots of stimulation.
The challenges associated with undiagnosed autism in females often lead to misdiagnosis of other conditions such as social anxiety or borderline personality disorder. Choosing a private autism assessment service with clinicians who are experienced in assessing females will ensure that the female presentation is not missed or misdiagnosed.
You can read more about the signs of autism in females here
Can a 2-year-old have a private autism assessment?
Children in the early years can be assessed for autism from around the age of 2, although not all private assessment teams are skilled in working with this age group of children.
Although many frontline health and education professionals often dismiss parental concerns about autism in the early years, early identification of autism leads to better outcomes for children, and therefore, early assessment and diagnosis are important.
Children who present with signs of autism at a young age often have a similar pattern of behaviours; you can read more about the signs of autism in 2 year olds here
What other things should I consider when choosing a private autism assessment?
As mentioned numerous times in this article, the most important things to consider when choosing a private autism assessment provider are a) ensuring that they are NICE compliant so that public bodies will accept the diagnosis and b) that clinicians working in the service are highly experienced in the range of autism presentations across the age range.
Clinical experience will not only ensure that you receive a robust assessment but will also ensure you receive appropriate advice and guidance following the assessment. When seeking a private autism assessment, clarify whether the clinicians are skilled in your area of need and whether there is an opportunity to ask questions and seek advice.
You may also want to consider if the service is willing to help ensure you access the correct assessment and whether an autism assessment is right for you. A reputable service will not charge you for preliminary questions or for reviewing screening tools and helping you to decide whether an assessment is right for you.
Most people seek an autism assessment service that is close to home for convenience. It is worth considering that a private autism assessment is a one off investment and an autism diagnosis last for a lifetime. It may be worth travelling a little further afield to find a service that meets your needs and will offer you the best experience.
You can find details of our assessment service and clinics here
