Autism Spectrum Conditions

Some common reasons that people might seek an autism assessment are:

• To understand themselves and their experiences better.
• To get support in work or education.
• To improve quality of life and mental health.
• An autism diagnosis can also help you connect with other similar people.

Once we have received the referral, we will ask you to complete a questionnaire to help gather further information about you to support the request for an Autism assessment and make sure an autism assessment is the right option for you.

We will review the information to decide the best course of action. We may need more information to determine if an assessment would be of benefit to you. Once we have sufficient information with regards to an autism assessment, a letter or email will be sent to you to confirm that you are on the waiting list.

As part of the assessment, we ask you to bring someone who has known you since a young age, such as a family member. Your family member is useful for talking about you as a child as you might not remember a lot of things from your very early life. This information can also be really helpful when it comes to deciding the outcome of the assessment, and we might not be able to come to a conclusion without it. If you can, please bring with you any school reports to your first appointment. We may also access relevant medical information if you consent to this.

You will have a lead practitioner who will be your main point of contact throughout the assessment process. The assessment itself can be long, but it is essentially a conversation about you and your life. During the assessment, there may be a break, and you can take in food or a drink with you to your assessment.

If you have a learning disability and think you may be autistic, please contact your local Learning Disability Community Team.

Watch our video to find out what to expect during an autism assessment.

Autism assessment day checklist

Before the appointment

•  Confirm the time and location of your appointment
•  Check travel arrangements (route, parking, public transport)
•  Bring any required paperwork (such as referral letter, GP notes)
•  Prepare a list of questions or concerns you want to raise
•  Pack comfort items (such as noise cancelling headphones, fidget tools)
•  Bring snacks or water, especially if the appointment is long.

Documents to bring

•  Developmental history (such as milestones, school reports)
•  Medical history (including mental health, sensory issues)
•  Any previous assessments or diagnoses
•  Examples of challenges (social, sensory, communication)
•  Family observations
•  Diary or journal entries showing patterns or difficulties.

Mental preparation

•  Remind yourself: you’re not being judged, you’re being understood
•  Practice self-soothing techniques (try breathing exercises)
•  Know that it’s okay to take breaks or ask for clarification
•  If you feel overwhelmed, it’s okay to say so.
• You could watch our service video about what to expect when coming for an autism assessment (LINK)

During the appointment

•  Be honest about your experiences - even if they feel small or ‘normal’
•  Ask for reasonable adjustments if needed (that could be a quiet space or written questions)
•  Ask about next steps and timeline for results.

After the appointment

•  Reflect on how it went - write down your thoughts or feelings
•  Follow up with any additional documents requested
•  Confirm that you will receive a copy of the diagnostic report
•  Plan for self-care after the appointment (rest, treat, quiet time).

For some people who think they could be autistic, it might not be the right time for them to engage in an assessment, and that’s OK. They might have recently experienced a decline in their mental health, which might impact their ability to engage in the assessment, or they might want more time to consider all the information about an assessment to see if it’s right for them.

If now is not the right time for an assessment, it might be useful to have a look at some of the practical tips below to help you while you decide.

Our service uses a multidisciplinary team approach to decide the outcomes of all autism diagnostic assessments. Our multidisciplinary team is made up of different professionals such as:

• Clinical psychologists
• Speech and language therapists
• Occupational therapists
• Nurses
• Social workers

Our multidisciplinary team meets regularly to discuss autism assessments that have been completed. The team will consider all the information from the assessment including childhood information from an informant, school reports, and current difficulties.

Based on this information, the multidisciplinary team may decide:

• The person meets the diagnostic criteria for autism
• The person does not meet the diagnostic criteria for autism
• More information is needed to reach a conclusion.

If more information is needed, we may ask you to complete another more practical assessment, or we may ask to speak to somebody else who knew you well as a child as childhood information is really important in informing our conclusion.

These are some of the pros and cons some Autistic adults have shared with us.  If you have any questions regarding this, please don’t hesitate to contact the service.

Pros

• Being able to make sense of past difficulties
• Increased access to support services
• Additional help in educational settings, such as extra time or special conditions to help you focus on an exam
• Legal obligation for employers to make reasonable adjustments at work to help you manage difficulties you may be facing.
• Aids self acceptance and self identity
• Gain an understanding of self
• Validation of experiences through life
• Others have a better understanding of your experiences.

Cons

• You may be asked to provide a medical report from your GP which will hold details on the autism diagnosis.  This may have implications on/for/in relation to
  • Employment (eg. the military)
  • Visa applications (eg. migrating to some countries)
• Unfortunately, some people still experience stigma, prejudice, and discrimination due to their diagnosis
• Autistic people may also face additional barriers with accessing appropriate health services
• If you feel autism impacts your ability to drive safely you will need to inform the DVLA.

To find out what support is available following receiving a diagnosis of autism, you can view our leaflet - What support is available after diagnosis?

Self-identified? That’s valid too

Whether or not you have an official diagnosis of autism, your experiences and self-understanding are valid. Many people find that understanding autism and how it impacts them helps them make sense of their experiences and needs. The information and resources on this website may be useful to you wherever you are in your journey of self-understanding.

Support after an autism diagnosis

If you are autistic, you may benefit from our post diagnostic support groups. For more information, please visit: Post Diagnostic Support Group for Autistic Adults Guide. For more information visit National Autistic Society website.

We’re committed to making sure every autistic patient receives care that is respectful, personalised, and informed. That’s why we use the Autism Passport - a document created in collaboration with autistic people and local support groups - to help us understand your needs and preferences.

What is the Autism Passport?

It’s a personalised document that includes important information about:

• How you communicate
• Your medical history and emergency contacts
• Sensory sensitivities, phobias, and how you show pain
• What helps when you’re upset or overwhelmed
• Any difficulties you experience in daily life.

When to use it?

You can share your Autism Passport:

• During appointments to tailor communication and care
• In emergencies to help people understand how best to support you
• When working with other services, such as police or social care, to ensure consistent and respectful treatment
• If you're distressed, to follow your preferences and help you feel safe.

Who sees it?

It’s up to you who you want to share your passport with. You can share it with those who are directly involved in your care - such as doctors, nurses, and your support workers. It may help with communication and avoid misunderstandings.

Keep it updated

Please review your passport regularly and you can update it whenever you need to. If you lose it, you can create another health passport for yourself. Download and edit the passport.

Understanding autism in adults

If you are caring for somebody who has been diagnosed as autistic, it could be helpful to learn more about autism, and how you could support them. Here are some resources which you might find helpful:

• National Autistic Society
• Autism - NHS
• Understanding autism | Open University

Support for you as a carer

Caring for somebody else can be really difficult, and it is important for carers to try to look after themselves at the same time. Here are some services that offer support to carers:

• Carers UK offer information about different types of support available to support you and the person you care for. 
• Carers Trust provides information and support for unpaid carers. 
• The Autistic Spectrum Collective hold a carers peer support group on the last Friday of every month at their drop in event. 
• Mersey Care offers a service to support carers. You can find out more information about the service and what they offer on our Caring for our carers webpage.
• For support with your mental health, you can self-refer to Talking Therapies. This service offers support for depression and anxiety. You can find your local Talking Therapies service by typing ‘Talking Therapies’ into Our services
• You can also contact your local authority for a care needs assessment. This involves somebody from the local council visiting you to identify the needs of you or the person you care for. They will then come up with a plan for how to support you, which could include respite or formal care hours.

Many autistic people will experience mental health difficulties as well as being autistic, and autistic people may also be more likely to experience mental health difficulties. For example, evidence suggests that up to 50% of autistic people may also experience a diagnosable anxiety disorder (e.g. social anxiety or generalised anxiety).

Autism, unlike mental health, is a neurodevelopmental condition that you are born with, and mental health difficulties usually come about after significant stressors or difficult life events. However, there is a lot of overlap between the symptoms of some mental health conditions, and autistic traits.

What should I do if I experience mental health difficulties and have been diagnosed as autistic?

If you have received a diagnosis of autism and are experiencing mental health difficulties, you can still get support from mental health services. As autism awareness grows, more clinicians are learning about how to support autistic clients, and many may have lots of experience in working therapeutically with autistic people.

If you are working therapeutically with somebody, it might be helpful to let them know that you have been diagnosed as autistic, as it will help them to be able to support you effectively through the therapy. If you would like support on how to share your diagnosis with a healthcare professional, we have included some conversation starters in the section above. If they are from a Mersey Care service, you could also ask them to contact the Autism Mental Health Support Team, if they would like support with understanding how to support an autistic person in therapy, or reasonable adjustments for therapy.

What services could I use?

For mental health support for common difficulties like anxiety and depression, you can self-refer to your local talking therapies service by typing ‘Talking Therapies’ into Our services.

If you live in Liverpool or Sefton and would like support with trauma, or more complex mental health difficulties, you can ask your GP for a referral to the Community Mental Health Team. You can find out more information about your local service by typing ‘Community Mental Health Team’ into Our services.

If you live in Liverpool or Sefton and would like support with trauma, or more complex mental health difficulties, you can ask your GP for a referral to Step Forward Psychology. You can find out more information about this service by typing ‘Step Forward Psychological Intervention Service’ into Our services.

If you live in Halton, Warrington, St Helens, or Knowsley and would like support with trauma, or more complex mental health difficulties, you can ask your GP for a referral to the recovery team. You can find out more information about this service by typing ‘Recovery Team’ into Our services.

If you are working with a practitioner who is supporting you with your mental health, you could also ask them to contact the Autism Mental Health Support Team (AMHST, amhstconsultation.referral@merseycare.nhs.uk), if the practitioner would like support with understanding reasonable adjustments for therapy.

If you or somebody else if in danger call 999 or go to your local A&E now.

If you need urgent help for your mental health, get help from NHS 111 online or call 111.

Your mental health is just as important as your physical health. You will not be wasting anybody’s time.

You can also reach out to any of the following sources for help in a crisis.

• Samaritans – call 116 123 for free, confidential support.
• Shout 85258 – text ‘Shout’ to 85258 for free, confidential support via text.
• Papyrus UK Suicide Prevention – call the 24/7 Hopeline on 0800 068 4141.
• Campaign Against Living Miserably – call 0800 585 858 for support in a crisis or visit the CALM website for more crisis resources.
• Switchboard – a helpline specifically for individuals identifying as LGBTQ+, call 0300 330 0603 for support in a crisis.
• Liverpool Light Café out of hours crisis support – a safe place for individuals in crisis.

Maintaining our physical health and wellbeing is really important. However, for autistic people who may have sensory differences, or difference in understanding how they are feeling, it can be difficult to notice changes in physical health. It might also be really difficult to attend healthcare appointments as hospitals and GP surgeries can be difficult sensory environments, and autistic people might have differences in the way they communicate about their illness or symptoms.

Regular check-ups with health care professionals can help recognise and diagnose us with any health problems we may be facing. For more information about how our service can support your physical health you can read our leaflet: Staying healthy with autism guide.

Autism in women and marginalised groups is often misunderstood, underdiagnosed, and shaped by intersecting social, cultural, and systemic barriers. Here's an overview of the key issues:

Autism in women: Why It’s often missed

Most autism research and diagnostic tools were developed based on male-centric models, focusing on traits more commonly seen in boys (such as repetitive behaviours, overt social difficulties).

• Women often present with subtler traits, such as:
  • Internalised anxiety
  • Social masking (mimicking allistic behaviour)
  • Intense but socially acceptable interests (such as animals, literature)
• This leads to misdiagnoses with anxiety, depression, Emotionally Unstable Personality Disorder, or Attention Deficit Hyperactivity Disorder instead of autism.

Social and cultural expectations

• Girls are often socialised to be compliant, nurturing, and emotionally expressive, which can mask autistic traits
• Many autistic women internalise their struggles, leading to burnout, low self-esteem, and late diagnoses. These difficulties could also be misinterpreted as mental health difficulties.

Autism in marginalised communities

Intersectional barriers

• Individuals from racial and ethnic minority backgrounds face additional challenges:
  • Cultural stigma around mental health and disability
  • Language barriers and lack of culturally competent services
  • Implicit bias from educators and clinicians and a lack of understanding of how cultural norms may impact autistic presentation.

Systemic challenges in diagnosis and support

Clinical Limitations

• Standard tools are less culturally sensitive and may miss female presentations
• Social camouflaging can lead to missed diagnoses, especially in women or racial or ethnic minority groups.

Lack of inclusive services

• Many autistic individuals face:
  • Long wait times
  • Inaccessible services
  • Underfunded support systems, or a lack of support following receiving a diagnosis
• These issues are worse in low-income, rural, or minority communities

What we are doing

• Training for clinicians on female and culturally diverse presentations of autism
• Using inclusive measures which gather detailed developmental history, and screen for internalised or masked presentations to ensure accurate diagnosis
• Patient-led service development initiatives are helping to develop our service by asking our patients for feedback, and ideas for how we can improve what we do

What is an autism assessment? (from Autistic society)

An autism assessment is a structured process where professionals gather information about a person’s development, behaviour, communication, and sensory experiences to determine if they meet the criteria for Autism Spectrum Condition.

Who will complete my autism assessment?

The assessment will be carried out by a qualified professional who has received specific training on autism. Our service also takes a multidisciplinary team approach where a number of trained and qualified professionals will be involved in reviewing your assessment and deciding whether you meet the diagnostic criteria for Autism Spectrum Condition.

How long will the assessment take?

Each appointment is scheduled for three hours, though depending on the information provided, this can vary. We use a thorough assessment involving detailed developmental history. We understand that many people that we see have had life experiences that may have impacted on them, and we have diagnosticians that are trained to understand this alongside possible autism. We may need to schedule additional appointments to ask additional questions, or we may seek additional childhood information.

How long will it take to get my diagnostic outcome?

We aim to give you the diagnostic outcome within 4-6 weeks of completing the assessment process. In that time, we will discuss your assessment with our multidisciplinary team and draft your assessment report. However, this can vary as we may need to gather additional information or complete additional assessments. It may feel like a long process, but we want to make sure we get the right outcome.

How accurate is the assessment?

Our assessment process uses validated tools, and assessments are carried out by qualified and trained professionals. However, the accuracy of the assessment depends on the information gathered. It is therefore really important for you to bring a childhood informant, and relevant documentation to your assessment if you have it, to aid our decision making.

Is the assessment confidential?

Anything discussed in your assessment will remain confidential. Only if you indicate that you or somebody else is at risk of harm would this confidentiality be broken. As standard your GP will be provided with a copy of the diagnostic assessment report.

Could receiving a diagnosis of autism impact my employment or education?

While it is unlikely that receiving a diagnosis of autism will impact on your employment or education, this depends on your employer or education provider and if you choose to tell them. Under the Equality Act (2010), all autistic people are entitled to reasonable adjustments to support with employment and education, so disclosing your diagnosis could help others to understand you better, and to get the support you need.