The Autism Assessment Process
Understanding Autism Assessments for Under 18s
When someone thinks a child might be autistic, they go through a process called an autism assessment to find out for sure. This process can feel confusing and uncertain, but we're here to help explain it to you. We've taken the following guidelines from the NHS website, however, these guidelines will vary between different areas in the UK. Contact your local NHS Trust for specific guidelines. Under each section, you can find ways in which Autability can help you learn more or find support.
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Stage 1: Identifying & Referral
How can we help?
The first step is to notice certain traits or behaviors in a child that could be signs of autism. These traits can be noticed by the child themselves, their family, teachers, or other people who know them well. If these traits are causing concerns or difficulties in their life, they can ask for a formal assessment for autism. Sometimes, cultural beliefs or the stigma around autism can make it harder to seek help, but it's important to overcome those obstacles. Identifying Autism Usually, people start by talking to professionals like doctors or teachers about their concerns. But it can be hard to express these concerns, and sometimes people may not understand or be supportive. It's important to take your time and explain the traits you have noticed and how they affect your daily life. You should also talk about any other difficulties or needs you have. This will help determine if an autism assessment is the right thing to do or if there's a different type of assessment needed. It's also important to consider why you want to get assessed, what you hope to gain from it, and any cultural factors that might affect the process. If there are immediate needs or risks, it's crucial to make a plan to address them. Referral for Autism Assessment Getting a referral for an autism assessment can be tricky because there's not always enough information available. Many people and their families face delays and confusion about the process, who can make the referral, and what happens next. This can be stressful and make it harder to get the support you need. Assessment services should provide accurate information about the assessment process. The way referrals are made can vary depending on your age and the available services in your area. Some places allow referrals directly from doctors, while others might require additional assessments or screenings first. Usually, professionals in healthcare, social care, education, or the justice system make the referrals. In some cases, you might be able to refer yourself or have a family member or caregiver refer you. To make sure the assessment is thorough, the referral should include important information from you and your family or caregivers. The more details you provide, the better the decision-making process will be. For kids, the referral should include information about their development, school, and any concerns raised by teachers or existing support they have. How can we help? Here are some ways Autability can help you with stage 1:
Information and support on parenting a neurodivergent child
Helps to understand what autism is NOT
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A great introduction to who your child is which can be used to highlight their strengths and differences to potential referrers
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Helps to support your child by adding a structured timetable
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Introductory information about autism which may help to evaluate if your child would benefit from an autism assessment.
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A good way to highlight the sensory difficulties your child has for referrers
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Visit our family support pages for more information
Stage 2: Screening & Triage
How can we help?
This step helps determine if someone is eligible for autism services and what specific parts of the assessment they need. Screening After a referral is received, an administrative team and clinicians work together. The administrative team checks if the referral meets certain criteria for the assessment service. If the child doesn't meet the age requirements or if they have other diagnoses or difficulties that aren't part of the autism assessment, the referral might be declined. Usually, senior clinicians or a team of experts make these decisions. If a referral is declined, it is sent back to the person who made it or their doctor. Triage Triage is a way of sorting and prioritizing people based on their needs. There are different ways to do this: 1. Filling out forms: You might be asked to fill out a questionnaire or form to give information about yourself. 2. Looking at documents: The people assessing you might read letters or documents from doctors, teachers, or other professionals who know you. 3. Talking to you and your support system: The assessors might have a conversation with you, your family, caregivers, or friends to better understand your situation. 4. Consulting with professionals: The assessors might talk to other professionals who have been involved in your care or know you well. The goal of screening and triage is to decide what should happen next in the autism assessment process. It helps determine if you need an assessment or if you require support from a different service. Here are the most common outcomes of screening and triage: 1. Discharge: If it's determined that you don't need an autism assessment, you might be discharged from the service. You might be referred to another service that can better help you. 2. Wait and See: Sometimes, they might decide to wait and see how things develop. They will set a time to review your situation in the future. 3. Referral to Another Service: If you have urgent problems that need immediate attention, they might refer you to another service for help. 4. Referral to National Specialist Service: If your needs are more complex, you might be referred to a specialized service that can provide an autism assessment. 5. Autism Assessment without Interim Input: In some cases, you might be offered an autism assessment without needing additional support from another service. The assessment will be customized to your needs. 6. Autism Assessment with Interim Input: In certain situations, you might have an autism assessment along with recommendations for support from another service. This could involve getting help for mental health issues or special educational needs.
Information and support on parenting a neurodivergent child
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A great introduction to who your child is which can be used to highlight their strengths and differences to potential referrers
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Helps to support your child by adding a structured timetable
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Introductory information about autism which may help to evaluate if your child would benefit from an autism assessment.
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A good way to highlight the sensory difficulties your child has for referrers
Stage 3: Pre-assessment support
How can we help?
There is often a waiting period between the screening and triage and the actual autism assessment. During this time, it's important to provide support and information to individuals and their families. Keeping you informed about the assessment process: You should receive regular updates about how long you might have to wait for the assessment. However, you can choose not to receive these updates if you prefer. The updates should include: - Why there's a wait (like many people needing assessments or needing to address other issues first). - The estimated waiting time. - Contact information for someone you can reach out to if you have questions or if there are changes in your situation. - Information about who to contact if you're worried or if your symptoms get worse. - What the next steps in the assessment process will be and when they will happen. - Copies of these updates should also be sent to the person who referred you for the assessment. Providing resources and support while you wait: You might need support from healthcare, social care, or education services while waiting for the autism assessment. It could be related to autism traits or other issues like anxiety or sleep problems. Your family might also need advice and support during this time. The assessment service might offer: - Contact details for local services that can help you with healthcare, social care, education, or other needs. - Information about the assessment process, what might happen, and answers to common questions. - Information about autism, including tips for managing autism traits. - Information and strategies for dealing with common problems like low mood, anxiety, or sleep issues. - Information and strategies to help your family reduce stress and improve well-being. - Support groups where you can connect with other people going through the assessment process. - Information should be provided in a way that's easy for you to understand, including translations or versions
Information and support on parenting a neurodivergent child
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Learn about why autistic people may suffer from anxiety, with practical tips on how you can support them
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A basic introduction to masking
Helps to understand one of the most distinctive features of autism which may be a barrier during the assessment
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Watch our introductory video on masking and other subjects to broaden your knowledge of autism
Helps to support your child by adding a structured timetable
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Introductory information about autism which may help to evaluate if your child would benefit from an autism assessment.
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A good way to highlight the sensory difficulties your child has for referrers
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Podcasts from Autability and The Autism & ADHD Diaries
Stage 4: The assessment
How can we help?
When conducting an autism assessment, professionals have specific goals in mind. Here are some of the things clinicians try to achieve: 1. Finding Autistic Traits: They want to see if the person has traits that are commonly seen in people with autism. These traits may have been there for a long time and can cause difficulties in different parts of their life, like school, work, and friendships. 2. Checking for Other Diagnoses: During the assessment, they also look for other conditions that could be affecting the person's overall well-being and how they function. 3. Understanding Strengths, Goals, and Needs: They want to learn about the person's strengths, what they want to achieve, and what difficulties they are currently facing. This helps them get a complete picture of who they are and gives clinicians ideas for how to support them. 4. Considering Additional Assessments: If necessary, they might recommend other assessments, like medical or psychological tests, to get a better understanding of the person's needs. They should make sure they receive the right support from the right professionals. 5. Clinical Conclusion and Communication: Experts in autism will come to a conclusion about whether the person meets the criteria for autism. They will talk to the person and their family in a clear and sensitive way to explain the outcome. 6. Recommendations for Well-being: Based on what is found during the assessment, they will give written recommendations to help with the person's difficulties and needs. These recommendations are meant to improve their well-being and support their overall development. Standard Autism Assessment A standard autism assessment is usually done by one or two clinicians, like a psychiatrist and a mental health nurse or psychologist in training. This type of assessment is suitable when the information gathered during the earlier stages suggests that the person is likely to have autism and doesn't have significant mental health concerns. It works well when the assessment process is straightforward and involves getting information from the person and their family. Certain guidelines will be followed, like the NICE guidelines, which give professionals instructions on how to do the assessment properly. They make sure to have essential components in the assessment, such as talking to the person and their family, observing their behavior, considering their developmental history, and thinking about other possible diagnoses that weren't identified earlier. This is important, especially if there was a delay between the first referral, screening, and the main assessment. By following these steps, they make sure to thoroughly evaluate the person, figure out if they have autism, and identify any other conditions that might be affecting them. This helps them provide the right support and guidance to them. Themes for Clinical Interview During the clinical interview, clinicians talk about different important things to understand the person better. Some of the topics that might be discussed include: 1. Why You Were Referred and Expectations: They want to know why the person and their family, as well as the person who referred them, think they should have the assessment. They also want to understand what they hope to get out of the assessment. 2. How Autism Traits Affect Them: They explore how the person's autism traits, as described in the International Classification of Diseases (ICD-11) or the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), have affected their life. They also consider any factors that might have influenced these traits. 3. Current Concerns: They ask about the difficulties the person is currently experiencing and try to understand when these difficulties started and how they have changed over time. 4. Their Developmental History: They gather information about the person's development, like when they reached important milestones and went through different stages of growing up. 5. Their Life Experience: We want to learn about the person's day-to-day life, how they've been doing as they've grown up, Diagnosis Formulation and Consensus Meetings When doctors are trying to figure out a diagnosis for someone, they use a process called diagnosis formulation. This means they gather information from different sources, like interviews, observations, and records, to understand the person's unique situation. They don't just rely on test scores, but also consider the person's strengths, needs, and resources. This helps them come up with a diagnosis that fits the person's specific needs. Sometimes, the test scores alone may not tell the whole story. That's when doctors use their expertise to make the right diagnosis. They look at all the information they have to understand the person better. In a consensus diagnosis meeting, doctors and other professionals come together to discuss the person's case. They share all the information they have and make sure they have a complete picture. They might identify any missing information that they need to gather before making a final diagnosis. They also consider different perspectives from different experts to make sure they're making the right decision. Finally, they create a set of recommendations to share with the person and their family. By using the diagnosis formulation process and having consensus meetings, doctors make sure they have a complete understanding of the person's situation. This helps them give the right support and recommendations tailored to the person's needs.
More detailed information and support about the autism assessment procedure
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Learn about why autistic people may suffer from anxiety, with practical tips on how you can support them
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New resources coming soon....
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Stage 5: Post assessment support
How can we help?
Getting an autism diagnosis can mean different things to different people. Some may feel relieved and understood, while others may have mixed emotions. It's normal for family members and partners to have different feelings too. Some people may not be comfortable talking about it openly. It's important to have time to talk about the assessment results and ask questions. After an autism assessment, some people and their families may benefit from additional support or help. This support can come from different places like healthcare, social care, education, and voluntary organizations. Some may only need short-term support from one place, while others may need different types of support at the same time or one after the other. Autism assessment services can provide specific help for autistic individuals and offer guidance to those who are not diagnosed as autistic. The support after an assessment for autistic individuals may include: - More tests or assessments - Understanding their strengths better - Creating a personal profile or tools to explain their needs to others - Referrals and access to resources that can help them - Educational programs about autism, either one-on-one or in groups - Help with mental health and emotions, either one-on-one or in groups - Support for family members or caregivers, either one-on-one or in groups - Support from peers who have similar experiences - Personalized care and recommendations for social activities - Help during difficult times or crises - Coordination with other services that can provide additional support For individuals who are not diagnosed as autistic, what happens next depends on things like the skills of the doctors doing the assessment, how thorough the assessment was, and the plans in place for getting support.
More detailed information and support about the autism assessment procedure
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Learn about why autistic people may suffer from anxiety, with practical tips on how you can support them
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Accredited Online Training courses
Check out our online training and videos on a range of topics from supporting autism in school, to managing daily living tasks
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View our free and paid-for videos on a whole range of topics designed to support you and your family
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How to prepare and support your autistic child through school
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How to support your autistic child through the school holidays
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