Autism

Informed
Services

This ebook is intended to be an informed level

professional learning resource for all NHS
professionals working in adult services or with
adults. This includes mental health services.

Featu
the l res
expe ived
r
of au iences
ti
peop stic
le
 Contents

1. Introduction: Autism, mental health, and access to

services��������������������������������������������������������������������������������������������������������������������������������������������������� 3
2. Autistic masking and health services����������������������������������������������������������� 10
3. Social interaction and communication
with autistic patients ����������������������������������������������������������������������������������������������������������� 13
4. Sensory differences and processing ������������������������������������������������������������� 16
5. Appointments: things to know and do��������������������������������������������������������� 19
6. Different identities and intersectionality���������������������������������������������������� 21
7. Autistic wellbeing ����������������������������������������������������������������������������������������������������������������� 23
8. What could you do next? ��������������������������������������������������������������������������������������������� 25
9. Reading and resources����������������������������������������������������������������������������������������������������� 26

Autistic masking and Appointments: things Social interaction and

health services to know and do communication with
autistic patients

Sensory differences Different identities and

and processing intersectionality

Autism Informed Services Page 2

 Introduction
Introduction 1
Autism, mental
health, and access
to services

There is a clear need for improvements to life experiences and health

outcomes for autistic people.

Recent research highlights that:

The average life expectancy for autistic people is 54 years.

Up to 79% of autistic people experience co-occurring

mental health conditions, with a lifetime prevalence of 40% for
depression and anxiety.

23% of people with anorexia are autistic.

Autistic people are 9 times more likely to die by suicide.

Although autism is a lifelong condition, the average age of

diagnosis for autistic adults in Scotland is 31 years.

It is thought that as few as 29% of autistic adults are employed.

There is an under-identification of autistic people which means these

numbers may not reflect the true number of autistic people.

Autism is not a mental health condition in itself, but mental health

issues are common due to being autistic in a society designed for the
non-autistic majority and lack of acceptance, understanding and right
type of support.

Autism Informed Services Page 3

In taking steps to address these inequalities, autistic people must be
at the heart of identifying and planning to better meet needs.

‘‘ If you want to improve, here’s

what you need to know.’
All quotes included are

’’
from autistic people.

Towards Transformation

In March 2021, the Scottish Government published an autism and

learning/intellectual disability transformation plan called ‘Towards
Transformation’. It set out to address inequalities and make sure that
progress is made in transforming Scotland for autistic people and
people with learning/intellectual disabilities.

The Scottish Government and the Convention of Scottish Local

Authorities (COSLA) acknowledge there is more to do to make sure
that autistic people and people with a learning/intellectual disability
can live their lives to the full and be a rightly valued and integrated
part of our communities.

A collaborative and innovative leadership and engagement plan was

introduced. People with lived experience were at the centre of this to
make sure that change and improvement is led by the people who
will see the benefit in their daily lives.

Access to mental health services was identified in the Towards

Transformation Plan as being of critical importance. In 2021, Assenti
Research undertook research with 154 autistic adults about
experiences of access to mental health services in Scotland. Separate
research was carried out with parents and carers of autistic adults and/
or adults with learning disabilities. The research findings formed the
basis of the work that was prioritised for lived experience groups.

Autism Informed Services Page 4

The Scottish Government also asked the National Autism
Implementation Team to review the published literature about
Mental Health in Autistic Adults. The study found that very little
research is undertaken by or in partnership with autistic people
and there are some useful findings about prevalence (how common
autism and co-occurring conditions are) and considerations in terms
of re-thinking evidence and what outcomes are important.

Access to good quality health care on a basis equal to others is a

human right.

Working group

A working group was set up. As stated at the start of this section, this
working group developed co-produced informed level professional
learning resources for all NHS professionals working in adult services
or with adults.

The group focused on developing resources based on recent lived

experience of people in Scotland and the Assenti Research report.
The group consensus is that there are a lot of medical professionals
who misunderstand autistic people and their needs.

Often professionals:

1. Do not know enough about autistic people and miss key signals.
2. Or believe they do know about autistic people, but their knowledge
is outdated, inaccurate or misinformed.
3. Require up to date professional learning to know what they can do
in practice to improve experiences of autistic people in health care
settings.

The group believes that having health professionals who are autistic
themselves is very impactful, it can break stereotypes and highlight
the barriers that autistic people experience to accessing healthcare.

The content of this ebook was created by this working group.

Autism Informed Services Page 5

 Experiences of seeking mental health support

The research undertaken by Assenti Research in 2021 provided rich

information about the experiences and views of autistic people.

Within NHS services, it was rare for respondents to feel that they had
ever experienced a service which was autism informed. This was
seen as a baseline requirement.

Many respondents went further to say that there was a need for
autism specific services, that being autistic in and of itself was not a
mental health condition but that there was a need for services that
recognised and could respond to their needs as autistic individuals.

‘‘ It is insulting and distressing to be told by

a neurotypical (NT) counsellor how I am

’’
feeling – how could they possibly know?

Some respondents had been told by primary and/or secondary health

services that there was no mental health support for autistic people. In
some cases, this meant that they were not referred on by GPs at all
and in others it meant that they were pushed to participate in Cognitive
Behavioural Therapy or group therapy which was clearly not working
and on occasion was further negatively impacting mental health.

‘‘ There are no services for autism, plenty for

mental health but nothing that fits us. I get
the impression my GP doesn’t know what to
do with me so it’s a case of ‘ok we’ve tried
psychotherapy and that didn’t work, we tried
the counselling so let’s try psychiatry’.

’’
Autism Informed Services Page 6
 Impact of difficulties

The impact of the difficulties experienced by people responding to

the research included:

• Only seeking help when reaching crisis point.

• Significant mistrust of health professionals and very low
expectations of what help might be available to them – therefore
less likely to seek future support.
• Lack of mental health support was seen as a life limiting factor e.g.,
not being able to maintain employment/studies, problems with
relationships, not being able to live independently.
• For some respondents, their experience of ‘support’ only served to
further traumatise them and make their mental health worse with
several reporting contemplating suicide.

The experiences described here mirror findings across the literature

and indicate a lack of appropriate mental health support for autistic
people. Lack of understanding and support is associated with an
increased risk of suicide.

‘‘ It’s really important we are consulted and involved

in the process – so co-designing services from day
one. When you consult with neurodivergent people,
the input we give covers neurotypical people as well
so if you design with neurodivergent people in mind,
you’re making services better for everyone.

’’
‘‘ More joined up thinking. Autism falls with
learning difficulties but if you don’t have
a learning difficulty then where do you go
because autism isn’t a mental health condition.

’’
Autism Informed Services Page 7
‘‘ Involve autistic people in the design and
facilitation of programmes tailored to our
foremost needs, linking physical and mental
health. Some of the challenge is recognising
how we feel and adapting processes to us.

Priority for improvement:

’’
Autism informed professionals within adult
mental health services

It was clear from the research, consultation, and discussion that

all people working in and with health services need to be better
informed about the needs of autistic individuals. This includes
but is wider than primary care and GP practices.

The information from autistic people highlighted priority areas for

improvement. One of these was the need for universally autism
informed professionals within adult mental health services.

The Autistic SPACE Framework

Autism Informed Services Page 8

The challenges and solutions highlighted by autistic people in
Scotland are similar to those reported in other countries. Autistic
Doctors International are a group of autistic health professionals
working to address health inequalities. They have created a
framework to help professionals think about ways to support autistic
patients.

This useful information highlights the need for health professionals to

consider Sensory needs and preferences, Predictability, Acceptance,
Communication supports and adaptations and Empathy.

Their publications provide more information about adaptations linked

to each of these themes.

Sections 2 to 6 describe the things the working

group would like mental health practitioners to
know and the things that would help.

The embedded films feature autistic people

describing these key messages.

Autism Informed Services Page 9

2
Autistic Watch
the film
masking and
health services

It is important to know about autistic masking when seeing autistic

patients or patients who could be autistic.

What is masking?

• Autistic masking involves covering up or suppressing natural ways

of being, internal feelings, ways of moving, body language, and
impacts how an autistic person responds to sensory and social
experiences.
• Masking is a survival mechanism, a way of self-protection, an
attempt to meet others’ expectations to reduce the chance of
being judged or not accepted.
• Masking is sometimes a deliberate decision, but often it is
unconscious.
• Masking is not unique to autistic people but is also seen in other
minorities or oppressed groups.
• Autistic people may cover up their sensory experiences by
masking, a conscious or unconscious effort to fit in.

What are the implications of masking?

Masking is tiring and stressful and can lead to burnout. It can lead to
erosion of self-identity and trauma through the layering of masks over
time and ignoring or dismissing your own needs. For autistic people it
can feel unsafe to unmask and respond authentically.

Autism Informed Services Page 10

Not being accepted for who you are over time comes at a significant
cost to mental health leading to depression and even suicidality.
Masking means others often make assumptions about you and think
you are okay when you are not.

Watc
the fi h
lm

As a health practitioner what can you do?

These are the things that would help:

• Be aware of the significance of masking and the impact it can have

on the mental health and wellbeing of autistic people.
• Be aware that how someone presents does not necessarily
convey their actual experience. For example, an autistic person
can seem okay on the surface and have a tsunami of emotions
happening inside.
• Don’t make assumptions. Be humble and curious.
• Ask specific questions to understand how the person’s experience
impacts them, e.g.:

“How have you been able to manage daily care tasks?”

“Have you been able to participate in your usual favourite
interests?”

• Believe what the person tells you. Incorrect assumptions by

practitioners can lead to missed or incorrect diagnosis.

Autism Informed Services Page 11

• Help to make environments in your practice that are accepting,
validating and supportive, and this may reduce the need for autistic
people to mask.

However, remember it is not easy for autistic people just to take off
the mask, due to unconscious masking, layering of masks over time
and bad experiences in the past.

Further reading and resources

• Article by Dr Amy Pearson on Beyond masking and supporting

autistic authenticity.
• Preprint of an article on autistic masking ‘Masking is life’:
Experiences of Masking in Autistic and Non-Autistic Adults.
• The National Autism Implementation Team produced a Guide to
Autistic Masking with autistic people.
• This article by the autistic advocate Kieran Rose describes autistic
burnout.

Autism Informed Services Page 12

3
Social Watch
interaction and the film

communication
with autistic
patients

There are some barriers to successful meaningful interaction with

autistic patients. Communication is a two-way street; the focus
shouldn’t always be on autistic people adjusting to the medical setting.

Natural ways of communicating may look different for autistic

patients, including facial expressions, body language, and eye
contact. Autistic people may stim (previously described as self-
stimulatory behaviour) by making repetitive movements or sounds. It
is important not to form judgements based on behaviour.

The impact of anxiety and stress may cause difficulties and provoke
unexpected or undesired responses that may be difficult to understand.

An autistic person asking direct questions, not responding to

questions or not making eye contact should not be interpreted as
them being deliberately rude.

There may be a double empathy problem at appointments. Double

empathy is when people with different perspectives, such as
autistic and non-autistic people, interact and they can find it
hard to understand each other which can lead to a breakdown in
communication.

Autism Informed Services Page 13

 Watc
the fi h
lm

As a health practitioner what can you do?

These are the things that would help:

• Anticipate differences. Don’t expect or force an autistic person to

interact like a non-autistic person. Autistic people might need to
fidget, stim or laugh at times considered ‘inappropriate’.
• Listen to the autistic person like they matter.
• Be willing to bend and adapt processes.
• Foster a psychologically safe environment – many autistic people
are likely to people-please if they do not feel like they are in a safe
space.
• Understand what a good life looks like for the individual not in
comparison to non-autistic norms.
• Be aware that autistic people can feel pressure to demonstrate
progress in treatment.
• Don’t touch without permission. Make sure there is informed
consent before touch is used with a patient.
• Be aware that some autistic people are not able to speak when
they are dysregulated. Expect this, offer a pen and paper and slow
everything down.
• Avoid using buzzwords and jargon.

Autism Informed Services Page 14

Further reading and resources

• My health passport is a resource for autistic people who might

need hospital treatment.
• The National Autism Implementation Team created this animation
with autistic people about effective communication – More Than
Words: Supporting effective communication with autistic
people in healthcare settings.
• This video with Damian Milton explains the Double Empathy
Problem.

‘‘ I think the biggest thing in my experience has been

that people generally don’t have the patience or
understanding for my ways of communication. When
I’ve had mental health support with someone that
does have patience, it’s been incredible because
we’re able to work together to identify my emotions

’’
and figure out practical ways to help me.

Autism Informed Services Page 15

4
Sensory Watch
the film
differences
and processing

Autistic people experience things differently in terms of how

information is received, interpreted, and responded to.

This can mean:

• Autistic people can experience different senses more or less

intensely than non-autistic people, and this varies over time.
• Autistic people often lack an automatic filter of incoming sensory
information and have to work hard on interpreting it and focussing
on what is relevant.
• Difficulty recognising and interpreting internal states such as
hunger is common (interoception difficulties).
• Difficulty recognising and interpreting emotions (Alexithymia) is
also common.
• Sensory differences can also impact how autistic people
experience pain.
• When an autistic person is not believed about their sensory
experiences or is unable to understand what they feel, it can be
invalidating and can lead to trauma.
• Ongoing sensory overload can result in a meltdown. This is
an automatic physiological response such as fight or flight.
Meltdowns are not intentional behaviours or an autistic person
being oversensitive.
• Sensory stress can also cause some autistic people to
experience situational mutism, where they are unable to speak in
certain situations.

Autism Informed Services Page 16

 Watc
the fi h
lm

As a health practitioner what can you do?

These are the things that would help:

• Be aware that many hospital and mental health environments are

unfamiliar, unpredictable, and often have noises, lights and smells
that create a sensory nightmare for autistic people.
• Offer a quiet space to engage so that the background sensory
input is at a minimum.
• Allow the autistic person to do what is needed to self-regulate,
manage sensory load, and just feel okay (e.g. stimming, moving,
taking a break).
• Allow more thinking and processing time for interactions. Pace
things out and break down information, this does not mean
slowing-down-the-way-you speak.
• Help reduce the processing load by making things predictable,
being clear, saying what you mean and meaning what you say.
• Check any information that has been shared has been understood
(and this goes both ways).
• Ask follow up questions. We are more likely to open up when
asked a question again.
• Check the person understands what happens next and any advice
given.
• Follow up in writing the key information the autistic patient needs
to take away.

Autism Informed Services Page 17

• Offer alternative approaches to meet an autistic person’s needs,
for example one to ones, autistic groups, digital communication, or
creative therapy.

Further reading and resources

• Autism Understanding Scotland created a Sensory profile that

might help communication with autistic patients. There is also an
example of how to use it and guidance.

Autism Informed Services Page 18

5
Appointments:
things to know Watch
the film
and do

Making appointments can be very difficult for autistic patients and

they will often avoid it. The appointment experience itself can also be
very difficult for autistic people. Therefore, thinking about accessibility
is essential. For example, many autistic people struggle to or can’t
access the telephone.

Often autistic patients need to self-advocate about appointments at

a time when they are least likely to be able to.

As a health practitioner what can you do?

These are the things that would help:

• Provide autistic-led training on autism understanding to all

reception staff.
• Allow for autistic communication preferences and needs – such as
by providing alternatives to using the phone to make appointments
by using email or text bookings systems, and clear written
communication.
• Provide clear information in advance to increase predictability e.g.
information about directions, transport, photographs (locations
and people), what to expect when they arrive, set waiting time
expectations, how long will the appointment take, who they will
see, what will be asked/discussed, and what happens next.
• Provide appointment reminders.
• Allow longer time for appointments.
• Offer alternative options without a patient having to suffer,
complain, or quote legislation.

Autism Informed Services Page 19

• If there are any changes or delays to the appointment, ask all staff
to clearly communicate this to patients.
• Think about the waiting area and ask patients what changes might
help such as telling people how long they will be waiting for or
offering to turn off the radio.
• Make sure all signposting is clear.

Where waiting lists are long there should be communication about

the expected waiting time, self-care suggestions, information about
how to get help quicker if things get worse.

Watc
the fi h
lm

Further reading and resources

• Another working group in this workstream has developed posters

and a film for GPs and practice staff. These are linked to on the
NHS Education for Scotland Turas platform and on the Different
Minds website.
• Autism Understanding Scotland created this Autism Appropriate
Environment Checklist that could be used.
• This article relates to autistic experiences of hospital
appointments.
• This article describes communication mode preferences in the
autism community.

Autism Informed Services Page 20

6
Different Watch
identities and the film

intersectionality

Intersectionality is the word used to describe how an individual can

experience a variety of identities. For autistic people this might be
around neurodiversity, race, gender, class, sexuality, faith, disability,
or other things.

This will be unique to each individual.

The experience of cultural and neurodevelopmental intersectionality

cannot be inferred from physical appearance alone or put into
categories. It is important to look at the whole person.

More than half of autistic people have co-occurring conditions.

Common conditions include medical issues, such as epilepsy,
hypermobility or sleep disorders; developmental diagnoses, such
as language delay; mental health conditions, such as anxiety or
depression; additional neurodivergent conditions such as ADHD and
genetic conditions including Fragile X Syndrome.

Cultural minority status is about more than just ethnicity and bias
against differences can be shown in various ways.

As a health practitioner what can you do?

These are the things that would help:

• Don’t put everything down to a patient being autistic – be aware of

the risk of diagnostic overshadowing.

Autism Informed Services Page 21

• Be curious about the patient’s cultural background.
• Be aware of your own biases and take proactive steps to
address them.
• Be aware that things like social class, language, speech, and
accent affect how people are perceived.
• Don’t make assumptions about someone’s background in making
treatment advice and in general interaction (certain things might
not be possible such as suggesting community activities).
• Autistic patients often prefer questions to statements. Be aware
that plenty of autistic patients don’t want to open up about their
different identities.

Watc
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lm

Further reading and resources

• This research is an example of a condition which is prevalent in

autistic people but is often overlooked Neurodivergent people
more likely to experience pain, due to hypermobility.
• This article explores the role of intersectionality in how autistic
identity is understood.

Autism Informed Services Page 22

7
Autistic
wellbeing

It is important to understand that what is important for autistic

wellbeing and quality of life can look different to non-autistic people.

Health professionals should be open-minded about what an autistic

person’s normal can or should look like.

Mental health practitioners should make sure that the views, goals,
and targets are those of the autistic person themself rather than
based on neuro-normative expectations. Approaches should be
personalised to include what is important for the individual.

Research suggests the following may play a role in

supporting autistic wellbeing:

• Positive autistic social identity

• Peer support and connection to autistic community
• Access to passions and interests
• Feeling accepted, understood, and supported
• Agency and autonomy
• Appropriate support for co-occurring conditions
• Trauma informed practice

Poor mental health can manifest in autistic people in different ways

which creates a risk of misdiagnosis.

Further reading and resources

• Autistic well-being: A scoping review of scientific studies from a

neurodiversity-affirmative perspective.

Autism Informed Services Page 23

• This paper discusses how autistic quality of life is conceptualised.
• This paper is about the Foundations of Autistic Flourishing.
• This post describes autistic joy and what is important for autistic
wellbeing.
• This article summarises research on Positive autistic social
identity.
• This research article is on understanding mental health problems
experienced by the autistic population.
• This post is on Adult Misdiagnosis.

Autism Informed Services Page 24

8
What could
you do
next?

Thank you for reading this ebook.

These could be your next steps:

Reflect on the content of this ebook and see where you can make
positive changes in your practice.

Identify areas of priority, many of the things suggested relate

to mindsets and attitudes rather than wholescale changes or
expensive resources.

Involve autistic people, their representative organisations, and

their advocates in plans for service improvement.

Access autistic co-produced and/or delivered training.

Have autistic peers be part of any resource sharing.

Autism Informed Services Page 25

9
Reading
and resources

These resources all were led by or produced with the involvement of

autistic people.

Autistic mental health

• Assenti Research undertook research with autistic adults in 2021

on access to mental health services in Scotland.
• The National Autism Implementation Team reviewed the published
literature about Mental Health in Autistic Adults in 2021.
• Autistic Mutual Aid Society Edinburgh (AMASE) carried out a survey
and produced a report in 2018 titled Too complicated to treat’?
Autistic people seeking mental health support in Scotland.
• This presentation from 2021 on Autism and Mental Health by
autistic researcher George Watts includes sections on social
communication and sensory differences.
• This article by the autistic advocate Kieran Rose describes autistic
burnout.
• The risk of mental health misdiagnoses in autistic people is
described in this article.
• This article is on Risk markers for suicidality in autistic adults.
• This research article is on understanding mental health problems
experienced by the autistic population.

Approaches to support

• The National Autism Implementation Team organised a webinar for

professionals in 2023 on ‘Reflections on Cognitive Behaviour
Therapy and Autistic Thinking’.

Autism Informed Services Page 26

• This article describes communication mode preferences in the
autism community.
• Ehlers-Danlos Support UK have produced a Ehlers-Danlos
Syndromes GP Toolkit.

Guides and resources

• Another working group in this workstream has developed posters

and a film for GPs and practice staff. These are linked to on the
NHS Education for Scotland Turas platform and on the Different
Minds website
• Autistic Doctors International SPACE framework is designed to
help professionals think about important ways to support autistic
patients.
• The National Autism Implementation Team created a Guide for
GPs on Adults with Neurodevelopmental Differences.
• The National Autism Implementation Team created this animation
with autistic people about effective communication – More Than
Words: Supporting effective communication with autistic
people in healthcare settings.
• The National Autism Implementation Team created this poster with
autistic people for healthcare settings.
• These co-produced guidelines for communicating well with autistic
people in healthcare settings were published in England in 2022
More than words: Supporting effective communication with
autistic people in health care settings.
• There is an Autistic led online course on Future Learn titled Autistic
Health: Improving Access to Healthcare.
• The Developmental Disabilities and Mental Health Lab at York
University, Canada have produced a Mental Health Literacy
Guide for Autism which has some resources in it.
• My health passport is a resource for autistic people who might
need hospital treatment.

General

• Article by Dr Amy Pearson wrote this article on Beyond masking

and supporting autistic authenticity.

Autism Informed Services Page 27

• This is the preprint of an article on autistic masking ‘Masking
is life’: Experiences of Masking in Autistic and Non-Autistic
Adults.
• The National Autism Implementation Team produced a Guide to
Autistic Masking with autistic people.
• This video with Damian Milton explains the Double Empathy
Problem.
• This article relates to autistic experiences of hospital
appointments.
• This research is an example of a condition which is prevalent in
autistic people but is often overlooked Neurodivergent people
more likely to experience pain, due to hypermobility.
• This article explores the role of intersectionality in how autistic
identity is understood.
• This paper details the barriers to healthcare for autistic people.
• This post is on Adult Misdiagnosis.
• The Scottish Government worked with autistic people to create this
ebook titled Different Minds.

Autistic wellbeing

• Autistic well-being: A scoping review of scientific studies from a

neurodiversity-affirmative perspective.
• This paper discusses how autistic quality of life is conceptualised.
• This paper is about the Foundations of Autistic Flourishing.
• This post describes autistic joy and what is important for autistic
wellbeing.
• This article summarises research on Positive autistic social
identity.
• This article describes how autistic happiness may not always be
recognised as such by others.

Autism Informed Services Page 28