Providing psychoeducation after an

autism diagnosis: findings from an

evidence-based consultation project

Bryony Beresford & Suzanne Mukherjee

Title: Developing guidance and recommendations for providing psychoeducation
after an autism diagnosis: findings from an evidence-based consultation project

Authors: Bryony Beresford, Suzanne Mukherjee, Social Policy Research Unit, University
of York

Date: January 2023

Publisher: University of York

DOI: 10.15124/yao-myeq-qn63

Acknowledgements and disclaimers

This work was commissioned by the Autism Team of NHS England’s Learning Disability and
Autism Programme. The views expressed in this publication are those of the authors and not
necessarily those of the NHS, NIHR, or the Department of Health and Social Care.

Referencing
This report should be referenced as:

Beresford B, Mukherjee S. (2023) Providing psychoeducation after an autism diagnosis: findings

from an evidence-based consultation project. York: University of York.
https://doi.org/10.15124/yao-myeq-qn63

i
Table of Contents
Acknowledgements ........................................................................................................................ iv
1. Introduction ............................................................................................................................... 1
2 The project .................................................................................................................................. 2
2.1 Project overview ................................................................................................................... 2
2.2 Project objectives ................................................................................................................. 2
2.3 Project methods .................................................................................................................... 2
2.3.1 The consultation work .................................................................................................... 2
2.3.2 Review of existing autism psychoeducation programmes .......................................... 3
2.4 The structure of the report .................................................................................................. 4
3. Experiences and impacts of an autism diagnosis: existing evidence ...................................... 5
3.1 Understanding the wider context ....................................................................................... 5
3.2 The experiences of receiving an autism diagnosis ............................................................. 5
3.3 The wider literature on the diagnostic experience ............................................................ 6
3.4 The outcomes of an autism diagnosis ................................................................................. 7
3.5 Summary ............................................................................................................................... 7
4. Meeting needs arising from an autism diagnosis ..................................................................... 9
4.1 The options ........................................................................................................................... 9
4.2 Psychoeducation programmes ............................................................................................ 9
4.3 Evidence on the impact of psychoeducation programmes .............................................. 10
4.4. Psychoeducation programmes for autistic adults ........................................................... 10
4.4.1 Current autism guidance ............................................................................................. 10
4.4.2 Availability of autism psychoeducation programmes................................................ 10
4.4.3 Existing psychoeducation programmes for autistic adults......................................... 11
4.4.4 The impact of autism psychoeducation programmes ................................................ 11
4.6 Summary ............................................................................................................................. 12
5. Experiences of being diagnosed: what autistic adults taking part in the consultation work
told us ............................................................................................................................................ 13
5.1 Receiving the diagnosis ...................................................................................................... 13
5.1.1 The intensity of the emotional response .................................................................... 14
5.1.2 A pre-occupation with “What does this diagnosis mean for me?” ........................... 14
5.1.3 Practices affected how people felt about the diagnosis ........................................... 14
5.2 Needs experienced as a result of the diagnosis ............................................................... 14
5.3 The needs of family members ............................................................................................ 15
5.4 Summary ............................................................................................................................. 15
6. Meeting psychoeducation needs: key principles ................................................................... 16
7. The provision of ‘curated’ information resources .................................................................. 17
7.1 The need for ‘curated’ information resources ................................................................. 17

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 7.2 Types of information ........................................................................................................... 18
7.3 The importance of different media ................................................................................... 18
7.4 The provision of curated information: recommendations .......................................... 18
8. Practice prior to the psychoeducation programme ................................................................ 20
8.1 The diagnostic assessment session/s ................................................................................. 20
8.1.1 The diagnostic assessment session/s: recommendations.......................................... 20
8.2 The feedback session .......................................................................................................... 21
8.2.1 The feedback session: recommendations ................................................................... 22
8.3 The assessment report....................................................................................................... 23
8.3.1 The assessment report: recommendations ............................................................... 23
8.4 The de-brief appointment(s) .............................................................................................. 23
8.4.1 The de-brief appointment(s): recommendations ...................................................... 24
9. The psychoeducation programme ........................................................................................... 26
9.1 Views about psychoeducation programmes .................................................................... 26
9.2 Critical features of psychoeducation programmes .......................................................... 28
9.2.1 Autism practitioner and expert by experience involvement ..................................... 28
9.2.2 Content, structure and approach ............................................................................... 29
9.2.3 Group size and make-up ............................................................................................. 30
9.2.4 Timing ........................................................................................................................... 31
9.2.5 Venues and time of day............................................................................................... 31
9.2.6 Mode of delivery.......................................................................................................... 31
9.3 Reviewing existing autism psychoeducation programmes .............................................. 32
9.3.1. Context ......................................................................................................................... 32
9.3.2. The programmes and their development .................................................................. 33
9.3.2 Findings from the review ............................................................................................ 33
9.4 Autism psychoeducation programmes: recommendations.............................................. 34
10. Conclusions ............................................................................................................................. 36
11. References ............................................................................................................................... 38

List of figures
Figure 1: The different types of need of newly diagnosed autistic adults ................................... 1
Figure 2: Types of information and support need arising from receiving diagnosis .................. 6
Figure 3: Information and support needs arising from the diagnosis ....................................... 15
Figure 4: Responding to the psychoeducation needs associated with receiving an autism
diagnosis: overview of the recommended strategy .................................................................... 16
Figure 5: Existing autism psychoeducation programmes: areas of weakness ........................... 34
Figure 6: Meeting the psychoeducation needs associated with being diagnosed ................... 36

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List of tables
Table 1: Numbers consulted and consultation methods ............................................................. 3
Table 2: Being given an autism diagnosis: emotional responses............................................... 13

Acknowledgements

We are very grateful to all those who took part in this project. We know that, for many,
taking part required them overcoming multiple demands on their time or a reluctance to join
an unfamiliar on-line group meeting. Many shared difficult stories. Thank you all for your
commitment and contributions.

We would also like to thank the organisations and services who assisted by sharing invitations
to take part in the project with autistic adults or family members.

iv
1. Introduction
To date, the focus of much of the activity and resource directed at improving the lives and
outcomes of autistic people has been to increase access to a timely, high quality diagnosis.
As a result, the majority of specialist autism services providing diagnostic assessments are
just that: a diagnostic service with no immediate or longer-term post-diagnostic support
offered. Thus, mapping work carried out in 2016 identified just 18 localities (i.e. NHS
trusts/Local Authorities) in England with an autism-specialist service providing both
diagnostic assessment and post-diagnostic support.1 This figure, corroborated by national
audits,2 represents less than a fifth of localities in England.

This lack of any post-diagnostic provision risks two types of need remaining unmet, and
jeopardises positive outcomes being achieved as a result of the autism diagnosis, see Figure
1. First are any pre-existing needs (e.g. mental health, social, independent living etc.). Whilst
these might be identified during the assessment process, they will require the initiation of
referrals to (often non-autism specialist) services, typically by the GP. Second are the not
insignificant information and support needs arising from being diagnosis. The focus of this
report is the latter, collectively referred to as psychoeducation needs.

Figure 1: The different types of need of newly diagnosed autistic adults

Pre-existing
needs

Information &
support needs
arising from
receiving an autism
diagnosis

Outcomes

1
2 The project

2.1 Project overview

This is the report of a project commissioned by NHS England in response to a growing
evidence base on the information and support needs people experience when they receive a
diagnosis of autism, and the impact of failing to meet these needs. The project was carried
out by researchers at the University of York and commissioned by the Autism Team of NHS
England’s Learning Disability and Autism Programme.

This project focussed on just one element of post-diagnostic support: the information and
support needs arising from receiving an autism diagnosis, or psychoeducation needs. This
should not be taken to imply that other components of autism-specialist post-diagnostic
support are less important or not needed. Current NICE guidelines and national policy and
strategy documents make clear recommendations regarding what autism-specialist post-
diagnosis support should comprise, and recently published research supports this position.1

2.2 Project objectives

The overall objective for the project was to develop guidance and recommendations – for
NHS England, commissioners and autism practitioners - on meeting the psychoeducation
needs of autistic adults arising from receiving an autism diagnosis. It comprised two core
components:
 consultation work with autistic adults, family members and practitioners;
 a review of practice and interventions delivered by autism specialist services already
commissioned to provide psychoeducation post-diagnosis;

The project was informed by two bodies of evidence:

 the experiences and outcomes of receiving an autism diagnosis;
 the information and support needs which arise as a result of any diagnosis, and
interventions designed to meet such needs.

2.3 Project methods

2.3.1 The consultation work
We consulted with autistic adults, autism practitioners, autistic adults working as ‘experts by
experience’ in specialist autism services, and a small number of family members. The
principle purpose was to further understand the information and support needs arising from
being diagnosed with autism as an adult, and identify the interventions and practices
required to meet these needs.

2
Consultations took place between April and June 2021 via attendance at a focus group or
workshop or, where autistic adults were unable to attend a focus group, a one to one
conversation with one of the researchers, see Table 1. Invitations to autistic adults to take
part in the consultation work were distributed by two diagnostic services, Autistica’s Insight
Group, and via the research team’s existing networks. A total of sixty people took part, each
attending one consultation event. Services represented were situated across England.

Table 1: Numbers consulted and consultation methods

Total number consulted How we consulted

4 x focus groups
Autistic adults 26
2 x 1:1 conversations

Practitioners 25
2 x workshops
Experts by experience 5

3 x focus group
Family members 4
1 x 1:1 conversations

The autistic adults involved represented different ages and age at diagnosis, different
reactions to the diagnosis, and different experiences of post-diagnosis support, including a
some who had attended a psychoeducation programme, see Appendix 1 for further details.

Eight autism specialist services were represented in the consultation work. All were
commissioned to provide some level of post-diagnostic support, with seven currently
delivering psychoeducation programmesa in the post-diagnosis period.

This consultation work was reviewed and approved by University of York Research Ethics sub-
committee: Social Policy and Social Work (Ref: SPSW/S/21/1)

2.3.2 Review of existing autism psychoeducation programmes

Autism specialist services in England with extensive experience of delivering psychoeducation
programmesb were invited to take part in an interview about their programme and practices,
and share copies of any intervention materials. Eight of the nine services approached took
part. Seven were currently offering a psychoeducation programmeb to newly diagnosed

a
Described more fully in Chapter 4, psychoeducation programmes are manualised interventions delivered over
a number of sessions and designed to address information and support needs arising from receiving a
diagnosis. The preferred mode of delivery is via groups.
b
Services identified by the research team, primarily through previous national mapping work (Beresford,
2020).

3
autistic adults on a routine basis. The research team systematically collated this information
and then reviewed each programme against findings from the consultation work on what a
‘good’ psychoeducation programme for autistic adults should look like.

2.4 The structure of the report

Chapters 3 and 4 review existing evidence relevant to meeting the information and support
needs which people experience when they receive an autism diagnosis. This makes the case
that addressing psychoeducation needs should be the cornerstone to post-diagnostic
support, integrated into, and commissioned as part of, the diagnostic pathway.

Chapters 5 to 9 reports the project findings and makes recommendations. Chapter 10 sets
out key conclusions and the core principles of ensuring that the information and support
needs arising from receiving a diagnosis of autism as an adult are properly met.

4
3. Experiences and impacts of an autism diagnosis:
existing evidence

3.1 Understanding the wider context

In order to understand the information and support needs which arise from receiving an
autism diagnosis, it is necessary to understand what people’s expectations and experiences
may have been in the period leading up to that moment.

First, what people are hoping from the autism diagnostic assessment varies widely. Some are
positively looking for an autism diagnosis because it is seen as the means to access the
support they need or confirm something they have suspected for a while. However, in
instances where others have suggested and initiated the referral, the person may not believe
they could be autistic, or want to be diagnosed with autism.3, 4 1, 5

Second, many will have had to wait a considerable period of time for the diagnostic
assessment. In the UK, waiting lists are typically many months, if not years.5, 6 4 This period of
waiting may serve to increase expectations, or hope, that being diagnosed with autism will
improve things and open up new sources of support.

Third, the assessment process itself is demanding. It often involves attending a number of
different assessment sessions, often spread over a number of weeks.1, 7 While many report
being satisfied with this process,1, 4, 7 it can be challenging. This can be because the
diagnostician(s) are insufficiently expert in autism, or the focus is on the negative aspects of
the diagnosis, or there is no effort to adapt the physical environment to accommodate
sensory sensitivities.8 Even those assessed by high quality specialist autism services report
that the process is emotionally demanding due to involvement of multiple people and the
requirement to recall difficult childhood experiences.1

Thus people receiving the news that they are autistic are often very different from each
other, with some more vulnerable than others.

3.2 The experiences of receiving an autism diagnosis

Studies consistently report that the most common emotion people experience when they are
told they have autism is one of relief.1, 9-11 There are multiple reasons for this. Diagnosis can
offer an explanation of their experiences of life and the difficulties they have had.1, 9, 10 It can
legitimise how a person feels about themselves and how they behave, and it can allow

5
people to let go of, or re-frame, past struggles.9, 11 Finally, an autism diagnosis is seen as a
source of hope: unlocking access to the help they need.1

That said, it is important to note that, for some, their immediate reaction to the news
includes, or is entirely, a negative response. Thus studies report feelings of shock, confusion,
anxiety, anger, sadness, shame and being overwhelmed.1, 4, 10, 12-14

Critically, and perhaps rarely observed by diagnostic services or other practitioners, initial
feelings of relief may be superseded by negative, or mixed, feelings about the diagnosis.
People report struggling to make sense and process the diagnosis, and what it means for
them. They describe feelings of anxiety, confusion and dismay. There can also be sadness,
grief and anger over years which could have taken a different path or been less troubling if
they had been diagnosed earlier in life. Anger at others’ (e.g. family, health or education
professionals) failure to act earlier in seeking an autism diagnosis is another emotional
reaction described. Furthermore, a sense of hope generated from being diagnosed can be
lost when the lack of post-diagnostic support becomes apparent.1, 4, 8, 10, 12, 15-18

Finally, autistic adults report feeling unsupported as they try to process and deal with the
implications and possibilities of an autism diagnosis.1, 4, 9 Discovering there is no support to
help them with this process is distressing in itself, increasing feelings of isolation and having
nowhere to turn.1 We also know that a lack of support can mean the feelings and struggles
described above can endure and may also prevent individuals acting to address other needs
and situations in their life.1

3.3 The wider literature on the diagnostic experience

The evidence presented above reveals the range of emotional and informational needs
arising from being diagnosed as autistic. These align with those reported across a wide range
of diagnoses and summarised in Figure 2.19, 20

Figure 2: Types of information and support need arising from receiving diagnosis

 information and understanding about the condition and, if relevant, its treatment
 understanding emotional responses to the diagnosis
 acquiring self-care and self-management strategies
 advice on sharing the diagnosis with others
 recommendations about trustworthy sources of further information
 information about formal and informal support

6
Recognising that a diagnosis generates needs for information about the condition and living
with it, and support with processing, coming to terms and acceptance indicates a mutli-
faceted response is required.
To accept … and adapt.. a [newly diagnosed] patient must not only receive proper
information but also receive emotional support and guidance.19

It also implies that being diagnosed in itself carries risks because of the needs it may
generate, and the potential impacts on individuals if these needs are not met. We therefore
turn now to look at what is understood about the outcomes of receiving an autism diagnosis.

3.4 The outcomes of an autism diagnosis

Overall, existing evidence suggests that the outcomes of an autism diagnosis can be highly
variable. We know there is potential for a wide range of positive impacts arising from an
autism diagnosis. The diagnosis itself can provide people with an explanation for their
difficulties, exonerate them from feelings of fault or blame;12, 14, 21 mean they no longer feel
the need to be neurotypical12, 22 and are less constrained around using stimming to reduce
anxiety.23 Greater self-understanding, and situations that can trigger anxiety and distress, can
lead to the development of new coping strategies,9, 22 as well as greater self-compassion and
self-care.12 Some individuals report beginning to see the unique and desirable qualities of
being autistic,23 and/or improved self-esteem and self-acceptance.12, 15, 21 Diagnosis can also
enable individuals to access services and support,1, 21, 24 including opportunities to meet other
autistic people, providing a sense of shared experience and acceptance not found
elsewhere.14, 15

However, such positive impacts and experiences are not universal. We know that some
people report seeing no value in the diagnosis and struggle accepting it, with significant
negative consequences for their mental health.1, 9, 12 Experiences of disclosure of diagnosis to
others can be highly variable. While it can lead to some being more understanding and
positive towards the person diagnosed,12, 21 negative reactions are also encountered,
including the refusal of others to accept the diagnosis, being scrutinised for autistic traits,
being patronised or viewed as disabled, or others not understanding the significance of the
diagnosis for them as individuals.12, 21, 22 This can lead to a breakdown in relationships,
particularly where the person diagnosed seeks to establish a new identity and way of life.12
Some autistic adults report experiencing discrimination at work following disclosure,
sometimes leading to job loss.9

3.5 Summary
This chapter began with situating the experience of being diagnosed with autism in the
‘backstory’ of the circumstances leading up to the referral for diagnostic assessment and the

7
different feelings and expectations people may have. The emotional demands of a long wait
for an assessment, and the assessment process itself, mean some may come to the moment
of learning they are autistic from a position of vulnerability.

We then went on to summarise two key bodies of evidence: i) the experiences, and
emotional and informational needs, which being diagnosed with autism may generate; ii) the
outcomes of an autism diagnosis.

Together existing evidence reveals the complexity of responses and challenges that receiving
an autism diagnosis may generate. It also suggests that if people are to positively benefit
from an autism diagnosis and, equally important, the risk for negative outcomes is to be
minimised, information and support needs arising from that diagnosis have to be addressed.
This suggests that investment in diagnostic assessment alone cannot be justified, and that
diagnostic services need to have the resources and capacity to respond to and meet
psychoeducation needs. The following chapter considers what the evidence tells us this
support should look like.

8
4. Meeting needs arising from an autism diagnosis

4.1 The options

Any clinical or diagnostic team has two broad options with respect to addressing or
responding to the information and support (or psychoeducation) needs arising from a
diagnosis. Either its response can be partial and reactive,25 and indeed this is the experience
of many people across a range of diagnoses.25-29 Or its approach can be systematic and
holistic. The core pillar to the latter approach are psychoeducation programmes.25 We
describe these below and the evidence on their effectiveness. We then go on to consider the
evidence regarding their use by autism diagnostic services, and what is known about their
impacts.

4.2 Psychoeducation programmes

The overall objectives of psychoeducation programmes are to educate, support acceptance,
and empower newly diagnosed people. They are defined as being professionally-led
interventions which integrate systematic, structured educational elements about the
condition with therapeutic work to support acceptance of the diagnosis (and, if relevant, its
treatment), and to equip and develop coping and self-management skills. They span a fixed
number of session and written materials are typically used to supplement session content.30-
33,34

The therapeutic element can be regarded as ‘simple’, as opposed to complex (which would
require expertise in a particular psychological or psychiatric therapeutic technique or
qualification).25 Thus, psychoeducation programmes can (and are) delivered by a range of
professionals. The key thing is facilitators are expert in the specific condition and its
management and have the core communication and interpersonal skills required to deliver
the programme. Whilst not prescribed, psychoeducation programmes can be co-facilitated
by experts by experience.

Group-delivery is the preferred mode by which to deliver psychoeducation programmes. The

rationale for this are the benefits it offers in terms of shared learning, encountering others
with similar experiences, and facilitating new social connections which may endure once the
programme is completed.35, 36

Self-guided, or self-directed, psychoeducation programmes also exist.37 Whilst developed by

professionals, there is no or minimal professional involvement whilst the individual is
undertaking the programme.

9
4.3 Evidence on the impact of psychoeducation programmes
Recent systematic reviews of evidence on the effectiveness of psychoeducation programmes
for a range of conditions identify limitations in the current evidence base (e.g. number and
quality of studies, heterogeneous outcomes, interventions poorly defined). Despite this, all
conclude that existing evidence supports the use of psychoeducation programmes,33, 38-40
with improvements in knowledge of the condition, symptom severity, relapse rates,
adherence to treatment and psychosocial outcomes reported.

Some studies have explored factors which support intervention effectiveness. A key issue
appears to be the capacity to personalise programme content to maximise its relevance and
meaningfulness,41, 42 something that aligns with wider understanding about effective
teaching and information exchange.43 Furthermore, existing evidence does not support self-
directed, or self-guided, psychoeducation as an alternative to professionally-led
psychoeducation programmes.44, 45

4.4. Psychoeducation programmes for autistic adults

4.4.1 Current autism guidance
The NICE guideline46 recommends that all adults who have received a diagnosis of autism
should be offered a follow-up appointment to “discuss the implications of the diagnosis, any
concerns they have about the diagnosis, and any future care and support they may require”
(p22). Whilst not presented as having a psychoeducation function, the follow-up
appointment has the potential to address information and support needs but only in a very
limited way. Aside from this, psychoeducation needs are not acknowledged. This runs
counter to the NICE guideline for autism in childhood47 (which recommends the offer of a
psychoeducation programme to parents) and other diagnostic groups, including common
mental health problems.48

4.4.2 Availability of autism psychoeducation programmes

Work to map autism specialist services and what they offer carried out in 2016 found that
the great majority of diagnostic services are not commissioned to offer a psychoeducation
programme as part of their diagnostic pathway.1 Some services had offered psychoeducation
programmes in the past but these were no longer offered, either due to changes in
commissioning arrangements or waitlist pressures49 meant there was no capacity in the
service to deliver such programmes. There is no evidence to suggest any marked change in
this situation.

10
4.4.3 Existing psychoeducation programmes for autistic adults
As noted above, previous mapping work,1 and subsequent opinion gathering, suggests only a
small minority of autism diagnostic services in England offer a psychoeducation programme.
Each service has developed its own programme and none have published a manualised
version of it, or made it more widely available in some other format. Furthermore, no other
descriptions or manuals of autism psychoeducation programmes (from elsewhere in the UK
or otherwise) have been published.c

4.4.4 The impact of autism psychoeducation programmes

Evidence on the impacts of autism psychoeducation programmes is extremely limited. There
have been no trialsd and, to date, just one study has published evaluative evidence.1 This
study conducted an exploratory comparison of the experiences and outcomes of people
diagnosed by autism diagnostic services but differing in the support they received post-
diagnosis. There were two groups:
 ‘Diagnosis Only’ (DO) group: offered a single ‘de-brief’ session after the diagnostic
assessment was completed
 ‘Diagnosis & Support’ (D&S) group: offered a multi-session psychoeducation
programme (typically group-delivered), with some also receiving a de-brief session
beforehand. These services also addressed identified needs, either via in-house
interventions or referrals to other services or agencies, with these referrals typically
being supported by the service.e
Interviews with study participants six to nine months after diagnosis revealed that, whilst
emotional reactions at the moment of being told the diagnosis were similar for both groups,
their accounts of the subsequent months diverged markedly according to whether or not
they had attended a psychoeducation programme.

Those who had not attended a psychoeducation programme typically reported unresolved
(and sometimes quite significant and pre-occupying) difficulties with respect to
understanding and coming to terms with their diagnosis. Some described how they were still
actively searching for information and advice and/or that the lack of psychoeducation had

c
A few papers describe post-diagnosis groups for autistic adults (peer or practitioner led) (e.g. Crane et al,
2021; Hatton & Lee, 2021). However, the objectives of the group, facilitators, and/or the content do not align
with what is defined as a psychoeducation programme.
d
A team in Sweden report currently trialling a psychoeducation intervention for autistic adults and family
members. This comprises four two-hour sessions, with each session described as comprising two, 45 minutes
lectures which include pauses and time for questions. Findings have not yet been published. We question the
extent to which the intervention truly adheres to the notion of a psychoeducation programme given the strong
emphasis on didactic teaching. Furthermore, the rationale for the programme being for autistic adults and
family members is unclear and untested.
e
These latter services conformed to the NICE guideline recommended as the type of service which should exist
in every locality, referring to them in the guideline as ‘Specialist Autism Teams’.

11
had a detrimental impact on their mental health. Importantly, some believed the lack of
acceptance or resolution around the diagnosis itself was preventing them from attending to
other needs and difficulties in their lives.

Such feelings and experiences were not observed among those who had attended a
psychoeducation programme. Furthermore, many of these individuals were able to
specifically identify why the psychoeducation programme had been helpful to them and the
knock-on and wider positive impacts it had on their lives. These included greater self-
acceptance, feeling skilled and equipped to manage everyday life, a reduced sense of
isolation, and being able to seeing the strengths, or positive side, of being autistic.

Furthermore, an initial exploration of differences in outcomes between the DO and D&S

group suggest psychoeducation programmes may play a role in determining the outcomes of
an autism diagnosis. Thus, evidence of a potential difference in mental health in the
immediate post-diagnosis period, with a deterioration observed in the DO group.
Furthermore, at 12 months follow-up, statistically significant improvements in mental health,
ability to manage everyday life and contacts with autism-specific groups/communities
observed in the D&S group were not observed in the DO group.

4.6 Summary
We began this chapter setting out the two possible approaches to responding to the
information and support needs arising from any diagnosis. Either the response is partial and
reactive, or it is systematic and holistic in the form of a psychoeducation programme. We
then defined and described such programmes and summarised wider, and consistently
supportive, evidence on their effectiveness.

Focusing then specifically on autism, we noted the virtual absence of a reference of

psychoeducation needs in current autism guidance. This, and policy and commissioning
emphasis on timely access to diagnostic assessments, likely explains why the majority of
autism diagnostic services are not commissioned to provide an psychoeducation programme
post-diagnosis. We also reported that no existing psychoeducation programmes have made
their intervention manual publicly available, and each service in England delivering such a
programme has developed their own ‘in-house’. Finally, we described the limited evidence
available on the impact of psychoeducation programmes on the experiences and outcomes
of adults diagnosed with autism in adulthood.

12
5. Experiences of being diagnosed: what autistic adults
taking part in the consultation work told us
We now move on to report findings from our consultation work with autistic adults, autism
practitioners and autistic adults working as experts by experience in specialist autism
services. We preclude this, however, with an account of what autistic adults told us of their
experiences and responses to being diagnosed, and the needs this generated. It was these
stories that grounded deliberations on how services should respond, and what autism
psychoeducation programmes should look like.

5.1 Receiving the diagnosis

Among the autistic adults we consulted, their emotional reactions to being told they were
autistic replicate and affirm researchf, see Table 2.

Table 2: Being given an autism diagnosis: emotional responses

It felt like a massive weight was lifted to know there was a reason for my
Relief
struggles (Autistic Adult, ID 51))
It felt freeing. It felt like I had the freedom to take away my self-blame.
Elation
(Autistic Adult, ID 43)
Closure, new sense of
It felt right. It was who I was (Autistic Adult, ID 45)
identity

Hope I had a glimmer of hope that things might be better (Autistic Adult, ID 21)

Confusion about What does it mean? Why have you put me under this bracket? (Autistic
diagnosis Adult, ID 43)
After I got the piece of paper with the diagnosis and read it I almost didn’t
Confusion about self
know who I was anymore (Autistic Adult, ID 34)
I remember being ashamed of it, even though I had an answer and it
Shame made sense, and I could talk about it with some people, I felt ashamed
about it and kept quiet about it for many years. (Autistic Adult, ID 34)
I started wishing things has been different. If I’d found out earlier…. and
Grief that was a very strong feeling that I had nowhere to take (Autistic Adult,
ID 25)

f
Summarised in Chapter 3.

13
However, as well as further confirming existing evidence, their accounts also brought three
important new insights:
 the intensity of the emotional response
 a pre-occupation with “What does this diagnosis mean for me?”
 practices during the assessment and feedback session affected how people felt about
the diagnosis.

5.1.1 The intensity of the emotional response

First, and not so apparent in the research literature, was the intensity, and sometimes
overwhelming nature, of the emotions experienced immediately following diagnosis, as
illustrated by the following extract:
When I was diagnosed it was a bit like PTSD, I suddenly remembered things I hadn’t
before, it was like twenty thousand light bulbs being turned on at once, and I couldn’t
access any support. I went to mental health services, I went to my GP, and I couldn’t
get any help. I had to send my son away to spend Christmas with his Dad and I spent it
by myself. It took about 6 weeks to process everything and I really needed helping
during that time (Autistic Adult, ID 23)

5.1.2 A pre-occupation with “What does this diagnosis mean for me?”
The majority of autistic adults we consulted with described feelings of dis-orientation and
uncertainty, particularly in terms of what being diagnosed meant for them and their lives
going forward. Indeed, for many, questions such as these dominated their thoughts.

5.1.3 Practices affected how people felt about the diagnosis

Many also believed the nature of the assessment and feedback process contributed to how
they felt about being diagnosed as autistic.g They described how an assessment which
focussed on their difficulties made it hard to see the positives of an autism diagnosis and
undermined feelings of self-worth.
You have to go through this process where they are telling you your deficits, it’s
essentially a very negative process, so they’re telling you why you’re failing at being
neurotypical and then they say ‘Ok, that’s why’ and then that’s it. It’s upsetting
(Autistic Adult, ID 42)

5.2 Needs experienced as a result of the diagnosis

In line with existing evidence, the autistic adults described a wide range of needs associated
with the diagnosis, see Figure 3.

g
We note this has also been reported by Crane 2018.

14
 Figure 3: Information and support needs arising from the diagnosis

 Help with understanding why I have been diagnosed as autistic

 Support with my emotional response to the diagnosis
 Support with accepting diagnosis
 Factual information about autism
 Understanding how autism impacts on me and what it means for my life
 Advice on disclosure of diagnosis to others
 Guidance with sourcing trustworthy information on how to live with autism
 Advice on entitlements, reasonable adjustments, and advocating for self
 Information and advice about connecting with other autistic people

The diagnosis highlighted my difficulties but it didn’t give me solutions. (Autistic Adult
ID 41)
It’s not just about what you want to know. It’s also about what you need to know.
(Autistic Adult, ID 12)

5.3 The needs of family members

Whilst not the focus of this project, and not explicitly explored during our consultation work,
the psychoeducation needs of family members arising from an autism diagnosis was raised by
some autistic adults. There is insufficient data on this for us to report on this and we would
recommend a specific piece of work is carried out to investigate this issue further.

5.4 Summary
This chapter summarises the diagnosis experiences of autistic adults who took part in this
project. They align with the wider evidence, but added further insights. In particular, they
demonstrate the intensity of negative emotions which may be experienced on learning of an
autism diagnosis, and how these emotions, and the questions the diagnosis raises, can be
overwhelming. They also reveal that practices during the assessment process can affect how
someone will feel about the news of an autism diagnosis. Finally, they confirmed the wide
range of information and support needs such news generates.

With this in mind, we now move on to report findings from our consultation work on how can
services best meet the psychoeducation needs of newly diagnosed autistic adults. Chapter 6
sets out the key overarching message from this consultation work with subsequent chapters
considering in more detail the different things that need to be in place to ensure these needs
are met.

15
6. Meeting psychoeducation needs: key principles
There was strong and universal consensus among those we consulted that autism-specialist
services providing diagnostic assessments should also provide post-diagnosis support which
addresses psychoeducation needs associated with receiving an autism diagnosis. (They also
stressed that this is not the only type of autism-specialist post-diagnostic support which
needs to be available. In line with existing evidence and clinical guidance,46 they also called
for support with respect to presenting health, social and other needs, delivered by autism
specialists. However, these other aspects of post-diagnostic support are outside the remit of
this project.)

Those consulted were clear that responding to the psychoeducation needs arising from
receiving an autism diagnosis requires a multi-faceted approach. Figure 4 sets out the points
in the diagnostic pathway when attention needs to be paid to psychoeducation and the types
of intervention required. The figure also makes clear the need for flexibility, resource and
capacity to individualise psychoeducation. This is particularly with respect to the timing of
when key interventions are offered and the ability to offer, when required or indicated, the
psychoeducation programme via one-to-one sessions as opposed to group-delivery.

Figure 4: Responding to the psychoeducation needs associated with receiving an autism

diagnosis: overview of the recommended strategy

Subsequent chapters consider each of the elements set out in Figure 4, summarising
consultation findings and our recommendations. Given the provision of curated information
resources should occur at multiple points, we consider this first (Chapter 7). Chapter 8
consider practice and interventions prior to the psychoeducation programme, and Chapter 9
focuses on the psychoeducation programme itself.

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7. The provision of ‘curated’ information resources

A key findings from our consultation work is that, as well as directly addressing
psychoeducation needs, services must also support individuals to access additional sources of
information. Autistic adults and autism practitioners identified multiple points at which
directing to, or recommending, additional information should be considered (e.g. feedback
session, assessment report, de-brief appointment(s), during the psychoeducation
programme). Critically there was strong consensus that additional sources of information
should be salient, high quality and up-to-date. The following sections discuss these issues in
more detail.

7.1 The need for ‘curated’ information resources

The autistic adults we consulted highlighted the risks associated with individuals
independently seeking out information about autism, particularly in the time immediately
following diagnosis. This was both because of the preponderance of false or out of date
information available (both print and on-line), and the risk of being exposed to unhelpful
views and perspectives.
[Services] need to be clued up enough to point people in the right direction before they
go off and do their own thing and bump into these obscure websites and forums and
people spreading misinformation. (Autistic Adult, ID 11)

I went down a rabbit hole looking for information. Some of what I found was not
helpful. A lot was targeted at parents. I found it belittling and very hard to hear
parents talk about how difficult they found their kids. There are also branches of
autistic groups which take positions that can be detrimental to you. Not good if you
come across it and aren’t good at critical thinking (Autistic Adult, ID 42)

Some of the books I found were terrible, so I had to work out myself what was good
(Autistic Adult, ID 41)

The only place I would recommend people to go as a site that is autism led and put
voices first. There are too many so-called autism websites out there which are actually
run by people who don’t have autism. (Autistic Adult, ID 17)

It is very important, therefore, that newly diagnosed autistic adults have access to ‘curated’50
information resources. The use of the word ‘curated’ is deliberate, implying that
recommended sources of information should have been carefully selected and scrutinised by
experts by experience and practitioners. This will ensure additional information provided by

17
diagnostic services is safe, comprehensive and meaningful. Furthermore, the collection
should be regularly reviewed and updated.
The issue with recommending services is they may be good today, but they may not be
tomorrow. And you need to be very careful with websites...things like fake cures
(Autistic Adult, ID 17)

7.2 Types of information

Autistic adults and autism practitioners identified three types of information relevant to
addressing psychoeducation needs: ‘factual’ information about autism, information about
formal and informal sources of support (local and national), and information about living with
autism. The latter was regarded as critical to supporting acceptance and adjusting to their
diagnosis. ‘Living with autism’ information resources which had proved most helpful to the
autistic adults we consulted were ‘my life story/lived experience’ type material and ‘hints and
tips’ on living with autism authored by autistic adults.
I researched but the most useful thing was watching TED talks that dealt with how
people deal with it on a daily basis. (Autistic Adult, ID 31)

It’s the how to manage situations that I didn’t know and that’s harder to find. You can
only get this from other people on the spectrum. (Autistic Adult, ID 32)

I didn’t need the counselling, I need a more pragmatic intervention. I needed

somebody to say you know you can apply for these things, you can apply for this, this
is how you self-advocate for yourself when you go into hospital. (Autistic Adult, ID 15)

7.3 The importance of different media

Finally, the autistic adults we consulted were clear that any collection of information
resources has to include materials of different media – on-line only and print, audio and
audio-visual, and text and pictorial formats (e.g. comic book).

7.4 The provision of curated information: recommendations

 Diagnostic services should have available a curated collection of sources of
information which can be recommended to newly diagnosed autistic adults. The
collection needs to include information resources on living with autism, factual
information about autism, and information about local/regional/national support
organisations and services. It should include different media or formats, with experts
by experience closely involved in the resource content and its ‘look and feel’.

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 We note that some components of such a resource would be generic; that is, not
requiring local adaptation. There may be efficiencies, therefore, in collaborating with
other diagnostic services and/or partnering with autism organisations already acting
as information providers to create and maintain some of the information resources
offered.

19
8. Practice prior to the psychoeducation programme

8.1 The diagnostic assessment session/s

Undergoing an autism diagnostic assessment will be a new experience for most people. It
therefore generates its own information needs. Importantly, findings from our consultation
work indicate that whether and how these information needs are addressed can influence
responses to, and acceptance of, the diagnosis, and readiness for, and engagement with, a
psychoeducation programme.

8.1.1 The diagnostic assessment session/s: recommendations

 At an early stage in the diagnostic assessment process there should be a discussion
with the individual about the different ways people respond to hearing the outcome
of the assessment process. Clinicians should normalise these different emotional
reactions.

 Where possible, and without compromising the assessment process, the clinician
should explain the reason, or purpose, for each element of the diagnostic assessment.
They should reassure individuals that fuller explanations will be provided at the
feedback session.

 Throughout, the language used should refer to difference rather than deficit. The
person’s strengths and achievement should be noted, whilst acknowledging past or
current difficulties.

 Basic information about the psychoeducational support the service would offer if an
autism diagnosis was made should be provided (e.g. de-brief appointment;
psychoeducation programme). This should be done in such a way as to ensure that
the individual does not infer an autism diagnosis is likely, nor to increase
disappointment about the lack of support if autism is not diagnosed. It may be
helpful to offer a brief explanation of autism-friendly/autism-specific
accommodations in the way the psychoeducation programme is delivered.

 Practitioners should use the assessment sessions to form an initial judgement on

whether one-to-one delivery of psychoeducation programme may be required, either
because of the individual’s needs, or because of potential impacts on group dynamics
or others attending the group.

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8.2 The feedback session
There was strong consensus that the outcome of the diagnostic assessment should be shared
with the individual in a face to face meeting.

They just emailed it to me and that was it. (Autistic Adults, ID 32)

[It is important that we] can bear witness to the reaction and validate experiences.
(Practitioner ID 20)

Furthermore, the way the feedback session is managed can strongly influence how an
individual reacts and responds to the news of the diagnosis. Three issues are at play. First,
the way the decision-making leading to the diagnosis is explained. Second, how the diagnosis
is presented; that is, either in terms of deficits or differences. Third, the extent to which
emotional responses are attended to.

All the information I got was all very generic and not how it related to me….It didn’t go
through this is what we found and this is why have decided to diagnose you as autistic
and so I didn’t help me to process it. (Autistic Adult, ID 15)

Finally, advice related to disclosure must be provided. This was something that practitioners
we consulted had not typically considered or routinely integrated into their practice apart
from, perhaps, advising on informing employers. However, it was something that autistic
adults regarded as crucial. Some deeply regretted who they had shared news of their
diagnosis with, or how they shared it. In some cases, the negative consequences of this were
significant.

… there was an issue with safety for me after diagnosis as I told everyone, including
people that didn’t need to know. I could have done with some support straight after
with knowing how to step out into the world…. how to step out of this room. I learnt a
bit too late that you don’t need to tell anyone, or maybe [just] to a few people.
(Autistic Adult, ID 26)

I found that I shared too much [on social media]. [You] pour your heart out and then it
comes back at you, because people quickly judge you and if they don’t really
understand autism they can assume that you are incapable of doing certain things.
(Autistic Adult, ID 45)

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8.2.1 The feedback session: recommendations
 The feedback session should be a face-to-face.

 It should include a clear explanation about how the team has come to the decision to
diagnose autism, including the role played by the different components of the
assessment process in coming to that decision. Any conflicts with existing
understandings of autism should be identified and explored.

 Throughout, the language used should refer to difference rather than deficit. The
person’s strengths and achievement should be noted, whilst acknowledging past or
current difficulties.

 Individuals should be asked about their feelings about the diagnosis and emotional
reactions should be normalised. Individuals should also be advised that their feelings
about the diagnosis may change over time, and that is normal.

 The session must include offering advice and discussing plans for disclosure. This
should cover all relevant groups/settings (e.g work, family, social networks), including
social media.

 It should also include the offer, if the individual wishes, to notify their GP and any NHS
or LA social care services which they are currently using.

 The purpose of the assessment report(s) the individual will receive must be explained.

 Other elements of the post-diagnosis offer (e.g. de-brief appointment(s),

psychoeducation programme) should be explained. To support take-up, clinicians
should specifically identify components of these interventions which will address the
individual’s particular need or situation.

 In discussing the psychoeducation programme, care should be taken to: i) explain why
group-delivery is favoured (i.e. peer learning and support, opportunities to
create/extend social networks); ii) recognise the challenges of attending a group; and
iii) explain the autism-friendly/autism-specific accommodations in place to support
attendance. Written and/or audio-visual (i.e. video) information should also be
provided. This should cover programme content, photographs of facilitators and
venue, and travel options.

 Details of selected ‘curated’ information sources should be shared (see Chapter 7).

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8.3 The assessment report
All the teams involved in this consultation work provided individuals with a detailed written
account of the assessment and the conclusions drawn. From their perspective, the main
purpose of this was the individual to use to make the case for adjustments or
accommodations. For this reason, reports took a particular tone and emphasis, detailing
deficits and struggles. However, they recognised this created a tension in terms of the report
also being a positive and empowering document for the individual.

In contrast, the autistic adults we consulted with believed they were the primary audience for
the assessment report. They found the negative wording dispiriting and discouraging and
could undermine positive rhetoric and vocabulary used by practitioners during the
assessment and feedback sessions. Furthermore, the physical nature of the assessment
report increased the likelihood of individuals dwelling on its contents.

When I got my letter it highlighted all the negative and none of the positives and it felt
difficult to be left with that……….
(Autistic Adult, ID 25)

8.3.1 The assessment report: recommendations

 The assessment report must have a covering letter, or explanatory front page, which
clearly states the report’s purpose and intended audience(s).

 Whilst the individual is not typically the primary audience for such reports, clinical
teams should take account of the fact that reports will be read by them, and take care
to avoid language or tone which is negative or overly technical.

 Teams should consider incorporating a detachable section summarising the

individual’s strengths, or present this is a separate document.

 Teams should consider whether details of selected ‘curated’ information sources

should be shared (see Chapter 7) alongside the assessment report.

8.4 The de-brief appointment(s)

The autistic adults and practitioners we consulted believed that everyone diagnosed with
autism should be offered at least one ‘de-brief appointment’ in the period immediately
following the diagnosis, but also with the option to delay. They believed this would address
three key needs during that time: to address questions about the diagnosis itself (including
the connection between the assessment process and decision reached), to explore emotional
reactions and feelings about the diagnosis, and to support sense-making. There was

23
consensus that these appointments should be with the/a clinician involved in the diagnostic
assessment.

It’s really important that as soon as possible after the diagnosis there is a chance to sit
down with somebody to discuss it, how you are feeling about it, and how you can
move on from that point. (Autistic Adult, ID 11)

Practitioners taking part in the consultation work agreed; however, only a couple of services
taking part in this project were commissioned to do so. They noted that individuals can be
quite overwhelmed at the feedback session and needed time to process what has happened,
after which a de-brief appointment would be extremely valuable. Services commissioned to
provide a de-brief appointment believed they addressed needs which could not be
responded to within the group psychoeducation format. Practitioners also believed they
supported take-up and readiness for the psychoeducation programme, and ensured that
maximum benefit was gained from the programme.

When a person comes [to a group] not knowing anything it tends to mean they have a
lot of questions and the group can end up being about one or two people because they
need that information, and they often stay behind afterwards because they have a lot
of things they need to discuss, so for me I think going straight into a group isn’t a good
idea. (Practitioner ID 12)

8.4.1 The de-brief appointment(s): recommendations

 Individuals should be offered at least one de-brief appointment with a member of
diagnostic team. The purposes of such appointments are: to explore and discuss
feelings about the diagnosis and emotional reactions to it, to support with making
sense of the diagnosis, and to respond to questions about the diagnostic process or
diagnosis itself.

 An appointment within 4 weeks of the feedback session should be offered, but with
the option to request to delay. Where this occurs, clinics must undertake to pro-
actively contact individuals to re-schedule the appointment.

 Judgement about the number of appointments needed should be made on an

individual basis.

 Throughout the appointment, the language used should refer to difference rather
than deficit. The person’s strengths and achievement should be noted, whilst
acknowledging past or current difficulties.

24
 The appointment should check on experiences of disclosure and discussions and
advice on managing any future disclosures.

 Details of selected ‘curated’ information resources (see Chapter 7) should be

provided.

 The individual should be reminded about the psychoeducation programme. Care

should be taken to: i) explain why group-delivery is favoured (i.e. peer learning and
support, opportunities to create/extend social networks); ii) recognise the challenges
of attending a group; and iii) explain the autism-friendly/autism-specific
accommodations in place to support attendance. Written and/or audio-visual (i.e.
video) information should also be provided. This should cover programme content,
photographs of facilitators and venue, and travel options.

 At the end of the appointment (or at the final appointment), it should be explained
how the service will stay in touch (and, if relevant, the support the service can offer)
in the period until the psychoeducation programme commences.

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9. The psychoeducation programme

This chapter focuses on psychoeducation programmes and their role in meeting the
information and support needs arising from receiving an autism diagnosis. (See Chapter 4,
sections 4.2 and 4.3 for an overview of such programmes and evidence on their
effectiveness.)

We report findings from our consultation work on views about psychoeducation

programmes, including issues arising from the fact that these are typically group-delivered
interventions. We then go on to consider features of the intervention and its delivery which,
those we consulted believed, impact the quality and benefit of the programme. We then
report on our review of existing autism psychoeducation programmes against these criteria.
Finally, we make recommendations on the steps required to ensure psychoeducation
programmes can become routinely integrated within autism diagnosis pathways.

9.1 Views about psychoeducation programmes

Overall, the notion that every adult diagnosed with autism should be offered a
psychoeducation programme was supported by those we consulted. An underlying theory of
psychoeducation programmes is that peer-learning and the opportunity to hear and share
experiences are an important educational and therapeutic components (see Chapter 4). As a
result group delivery is the preferred and dominant mode. However, given feelings and
concerns which attending or being in groups can engender for autistic people, group delivery
was something we discussed extensively with those consulted. There was a range of views
and opinions.

Those who had attended a group-delivered autism psychoeducation programme highlighted

the importance and value of group delivery, with a range of particular benefits identified
including: the opportunity to learn and share strategies from others living with autism;
feeling understood and a sense of belonging; being in a social situation without feeling the
need to mask; and validation from the group supporting self-acceptance.

The internet is great for information but not for feeling less lonely. ........ I can be
myself with the [psychoeducation group]. It helped me to accept that being myself is
OK. (Autistic Adult, ID 21)

The biggest thing I got from the group was meeting others who share the same culture
because it’s just in them; so I’ve been trying to fit into other people’s culture, and it
turns out there is a culture of my own. (Autistic Adult, ID 43)

26
 ….there’s been a massive positive shift in my mental health. …it’s the bouncing ideas
and thoughts off people, getting a different perspective, validation from group
members. [The group means] I accept myself more. (Autistic Adult, ID 51)

Among those not offered a group psychoeducation programme, there were some who
believed this would have been valuable and they would have welcomed this opportunity.

That would have been really helpful, to have prevented future stress. I would have
found it really, really helpful to have met people in the same boat. (Autistic Adult, ID
14)

Others, however, were ambivalent about, or opposed to, group-delivered interventions.

There was mistrust or scepticism that they could be better than individual sessions. Some
regarded group interventions as ‘cost-cutting’ measures, which de-valued them and their
needs. The belief that groups could respond to individual needs and priorities was also
expressed. Finally, they highlighted that anxieties and concerns about being in a group could
be considerable, and therefore questioned the suitability of group-delivered interventions for
autistic people.

I would feel fobbed off. If you go on to any NHS mental health web site at the moment
you are offered group sessions on zoom and it feels like it’s just a cheap way to offer
it. ….it’s not tailored to me, it’s quite general, it would work for some people, it would
piss me off. (Autistic Adult, ID15)

….[we] should not to be shoe horned into groups when, because of our range of needs
and innate difficulties, groups are just difficult and so stressful. (Autistic Adult, ID 23)

I absolutely hate anything in a group….. I hate things where the only thing we have
common is that we are autistic I know from talking to my autistic friends that they are
absolutely pissed off with being offered things in a group, they just didn’t want it,
people will react very violently against it, particularly if that the only thing they are
offered. (Autistic Adult, ID 15)

Autism practitioners’ also shared their observations of the value of group delivery and
believed that it offered benefits over and above those gained from receiving a
psychoeducation programme via one-to-one sessions. It was for this reason that they chose
to deliver their psychoeducation programmes by groups (with some also having the option,
where required, to offer one-to-one delivery). They ascribed observed positive impacts on
self-confidence and mood to group delivery. At the same time, they also agreed that group-
delivered psychoeducation programmes will not be suitable or beneficial for everyone and
that the option to deliver via one to one sessions should be available.

27
These findings carry two key implications. First, diagnostic services should have the capacity
and resources to be able to deliver the programme via one-to-one sessions where attending
a group programme is not possible or advisable. (We note here that evidence does not
support self-directed psychoeducation (see Chapter 4).) Second, diagnostic services need to
respond to and address the perceptions and concerns that at least some individuals will have
about group-delivered interventions. This means the way diagnostic teams present the
psychoeducation programme to individuals on the diagnostic pathway needs to be carefully
planned so that these concerns and perceptions are consistently addressed. It also means
that proper attention is paid to sensory, psychosocial and practical issues which may act as
barriers to take-up and attendance.

9.2 Critical features of psychoeducation programmes

This section reports consultees’ views on the features of psychoeducation programmes which
they believed determined take-up, access, outcomes and experiences of such programmes.
We refer to these as the critical features of autism psychoeducation programmes. They
include:
 autism practitioner and expert by experience involvement
 the content, structure and approach
 group size and make-up
 timing
 venues and time of day
 mode of delivery

9.2.1 Autism practitioner and expert by experience involvement

In terms of both designing and delivering psychoeducation programmes, there was general
consensus that autistic adults and autism practitioners have key and different roles to play in
the development and delivery of psychoeducation programmes. Furthermore, their roles are
of equal importance.

The knowledge, skills and experience brought by autism practitioners (and identified across
all the different groups we consulted) included: authoritative scientific knowledge about
autism, extensive experience of the different ways autism can be manifested, and specific,
specialist professional expertise in supporting autistic adults (e.g. clinical psychology, social
work, occupational and speech and language therapies). In addition, their professional
training equipped them to identify or manage disclosure of risk or the need for additional
support and meant they were highly experienced in facilitating groups.

28
Autistic adults, acting as experts by experience (or peer mentors), were consistently
identified as making two key and unique contributions as co-facilitators: authenticity and
connection.
It’s not necessarily in the content of what is being delivered but in the authenticity of
the knowledge, and knowing how to redirect people, and knowing that somebody
actually identifies with the issue, and a feeling of trust that you are not being
perceived as other. (Autistic Adult, ID 25)

Autistic people need to be part of the support process. No one autistic people can
represent that experiences of everyone with autism but it’s better than someone with
no experience at all. (Autistic Adult, ID 16)

Among the services involved in this project, the overall narrative was of increasing
involvement of autistic adults in reviewing and revising programmes and in their delivery.
However, not all used experts by experience as co-facilitators and the terms under which co-
facilitators were contracted, or employed, to work with services was variable, as was the
quality of support and supervision. It was emphasised that experts by experience must be
properly trained and supported (e.g. de-briefs and supervision and receive appropriate rates
of pay.

9.2.2 Content, structure and approach

The core content and structure of psychoeducation programmes is broadly the same across
all diagnoses, with the objective of attending both to educational and therapeutic (e.g.
supporting acceptance, equipping and empowering) needs.25 Topics emerging from
discussions about what should constitute the core content of an autism psychoeducation
programme were as follows:

 factual information about autism (e.g. diagnostic criteria; neurodiversity)

 understanding and identifying how autism impacts me as an individual, and what it
means for my life
 sharing and exploring emotional responses to the diagnosis
 learning self-management skills, particularly managing anxiety, disclosure, self-care,
self-advocacy, and sourcing trustworthy information
 information and advice on rights and entitlements
 supporting connections with other autistic people, including other group members.

There was clear and strong consensus that didactic teaching should be kept minimal, or not
used at all. The use of lived experience materials (e.g. short films) alongside factual was
strongly endorsed.

29
Some services noted that they had revised their programmes to decrease the ‘taught
content’, and increase time allocated to interactive learning and the therapeutic elements of
the programme. This also allowed greater personalisation of the programme content to
reflect and respond to the characteristics, needs and concerns of group members, something
identified as important by the autistic adults we consulted. The exception to this was the first
session where less group work was used in order to allow individuals time to get used to the
group format.

Hard copies of teaching materials (e.g. Powerpoint slides) was strongly endorsed, and
services using ‘workbooks’ (containing teaching materials as well as space for notes and
recording individual responses to reflective activities etc.) reported they were well-received.
During our consultation work we heard a range of views on how an autism diagnosis should
be presented. Some autistic adults believed programmes should present being diagnosed as
a highly positive event, others did not agree. Practitioners and experts by experience were
unanimous that a more neutral stance was required in order to hold the group together and
ensure no one felt disenfranchised. This was because individuals attending may have very
different feelings about their diagnosis or be at different points in the process of accepting it.

9.2.3 Group size and make-up

The services involved in this project adopted different approaches to maximum group size,
with this ranging from eight to twelve. The autistic adults we consulted consistently favoured
smaller sized groups.

There was 15 in my group and it was too much. Negotiating turn taking was difficult,
stressful. (Autistic Adult, ID 33)

Those running psychoeducation programmes and autistic adults believed the value and
benefit gained from group-delivered psychoeducation programmes may be affected if an
individual’s age, gender or sexuality are different to the majority of those attending a group.
Services noted the tension between offering the psychoeducation programme in a timely
way and waiting until there were sufficient number to, for example, offer the option of
attending a women-only group, or groups according to people’s age.

From my perspective group work would be better with not so much of a mix of ages.
For example, one session was on relationships and the lads were laughing about it,
giggling and one was talking about Tinder and they thought it was great fun, and I just
thought I’m wasting my time here. (Autistic Adult, ID 32)

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9.2.4 Timing
There was strong consensus that the timing of when people are ready to engage with, and
will get most benefit from, a psychoeducation programme will vary between individuals.
There was also agreement that allowing sufficient time before the programme for processing
the news and implications of the diagnosis was very important, as was the opportunity to
attend one or more de-brief appointments.

Unless you have suspected from some time and it’s the final stage of the journey, it
can take you to thinking about things you have never thought about before. So then to
ask what information or help do you need, the person might not know, they might
need some time to accept it. I think offering [psychoeducation] straight away might
not be the best way forward, it needs to be flexible for the individual. (Autistic Adult,
ID 27)

I do think you need some time to process it. (Autistic Adult, ID 12)

For services, the numbers of people being diagnosed (including, sometimes, their
geographical location) determines the frequency at which programmes are delivered.
Certainly, individuals should be aware of the likely wait time for the programme. Equally
important is that where an individual turns down the first opportunity to attend the
programme, the offer to attend a future delivery of the programme should be made at least
once more.

9.2.5 Venues and time of day

Services were aware that only running the programme during the day risked excluding those
with work or who had other day-time commitments. Autistic adults stressed the importance
of offering day-time and evening deliveries. They also urged services to use venues easily
accessible by public transport and which could accommodate potential sensory needs. They
noted that programmes did not need to be run in the service’s main premises. Familiar
spaces in community settings were favoured: an approach successfully adopted by a number
of services involved in this project.

9.2.6 Mode of delivery

The COVID pandemic caused services involved in this project to implement on-line delivery of
their psychoeducation programmes. Although experiences of delivering and receiving
psychoeducation in this mode were still very limited at the time of this project, autistic adults
and practitioners who had experienced this mode of delivery were able to identify its benefits
and disadvantages.

31
Online groups were seen as minimising strain and emotional demands on participants (e.g.
being able to participate from home, ‘chat’ and ‘hands up’ functions made it easier to
contribute to discussions). Some believed they would not have attended a face-to-face
delivery of the programme.
….in your own surroundings, where you have the opportunity to mute yourself if you
want, feels like a more comfortable way to be able to contribute to these things, so I’d
love for it to continue online and not to be phased out when things go back to normal.
(Autistic Adult, ID 45)

I’m probably more comfortable online, my anxiety is less sitting at home with a
weighted blanket in my environment, so I’d rather get to know somebody that way
when I’m having to suddenly meet people I don’t know. (Autistic Adult, ID 42)

Overall, however, there was caution and concern about on-line delivery. This was located
primarily around experiences of lower, or ‘skewed’, take-up and a reduced likelihood that on-
going connections between group members will be formed. In addition, the lack of informal
gathering times before, during and after a session precluded informal one-to-one
conversations between an autistic adult and facilitator. For autistic adults, these were valued
as opportunities to follow-up an issue discussed during the session. Facilitators believed this
lack of one-to-one contact meant there was an increased likelihood for unmet needs post-
intervention.

A potential third option, for which there was some support among practitioners and autistic
adults, was a hybrid model whereby the group starts by meeting on-line and then moves to
face-to-face sessions part way through the programme.

9.3 Reviewing existing autism psychoeducation programmes

One of the core objectives of this projecth was to review existing autism psychoeducation
programmes. The main purpose of this was to see if any, judged against our consultation
work and existing evidence, could be regarded as ‘model’ programmes which NHS England
could recommend for use.

9.3.1. Context
It is important to offer some context to this review. All the services represented in this
project reported sustained and high levels of pressure on their services. They noted that
commissioning arrangements meant they had to direct greatest attention and resource to
providing diagnostic assessments, with increasing referral rates adding additional pressures.
A number reported that this compromised capacity for and investment in their

h
See Chapter 2, Section 2.3.2.

32
psychoeducation programmes. They also questioned the ethics of diagnosing without having
the resource to meet information and support needs which may arise from that diagnosis.

9.3.2. The programmes and their development

All the programmes we reviewed were unique and developed ‘in-house’ though some
integrated elements of existing autism self-management interventions. The topics covered
were similar: unsurprising given they were all psychoeducation programmes. When asked
about what would be required to manualise the programme to make it suitable for other
services to use, some reported this would take little work, others felt this would be a more
substantive task. None had been subject to independent evaluation.

Across all programmes, feedback from attendees and on-going review and reflection within
the team meant that programmes structure and materials had been revised (often multiple
times) in the period since their original development. Thus there was a strong sense of an on-
going learning process about the content, structure and practice of delivering
psychoeducation programmes. Practitioners taking part in our consultation work also noted
the absence of practice networks concerned with psychoeducation post-diagnosis which
hampered sharing of learning across services, contrasting this with well-established
diagnostic practice networks. This was seen as a missed opportunity.
We work in these sealed units, vacuums, doing our own things. Diagnostic assessment
networks are better, they have more standardised practice. (Practitioner, Workshop 2)

Most reported that, at least in recent years, experts by experience had been involved to
some degree in reviewing and re-writing programmes and/or were now co-facilitating
programme delivery.

9.3.2 Findings from the review

We reviewed the content, structure and delivery of each of these programmes against the
findings of our consultation work, and existing evidence on factors affecting the effectiveness
of psychoeducation programmes. All fulfilled many of the key features of an autism
psychoeducation programme identified through our consultation work. However, each had
areas of weakness and none had been subject to robust evaluation (see Figure 5, overleaf).
As a result, none, in their current form, can be presented as a ‘model’ autism
psychoeducation programme which can be recommended to diagnostic services. We stress,
we are not saying these programmes do not offer great benefit and are highly valued.
Indeed, the development of a ‘model’ psychoeducation programme should build on and
incorporate elements and practices observed in existing programmes.

33
 Figure 5: Existing autism psychoeducation programmes: areas of weakness

Experts by experience not involved, or not sufficiently involved, in programme development

and delivery.

Clinical content risks engendering a deficit rhetoric and precludes exploration of what autism
means to, and is experienced by, individuals.

Lack of multi-disciplinary representation among programme facilitators (i.e. predominantly

clinical psychology) reduces holistic approach and breadth of knowledge/expertise about
local services, entitlements etc..

Underuse of interactive techniques in the educational elements.

Limited use of programme resources (e.g. handouts, workbooks) to reinforce and extend
learning.

Does not proactively support creation of on-going connections between group members, or
facilitating connecting in with existing networks and communities.

Programme includes elements in addition to psychoeducation, significantly increasing the

number of sessions.

Lower than expected take-up.

9.4 Autism psychoeducation programmes: recommendations

 Commissioning of autism-specialist diagnostic services should include the delivery of a
group-delivered psychoeducation programme, with the option of offering in 1:1
format if required, and with sufficient resource provided for this. In line with NICE
guidance that services for autistic adults should be multi-agency, and noting the
potential impacts of psychoeducation programmes on both health and social
outcomes, such programmes should be jointly commissioned.

 The provision of a psychoeducation programme post-diagnosis should be one of the

core quality standards of adult autism diagnostic services.

 There should be national-level investment in the development, and evaluation, of a

‘model’ psychoeducation programme co-developed and co-facilitated by autistic
adults and practitioners.

34
 Recognising this will take a period of time, until available we recommend services use
an existing autism psychoeducation programme(s)a, but also take into account
findings and recommendations set out in this chapter on programme content and
delivery.

35
10. Conclusions

The overall conclusions and recommendations on addressing the psychoeducation needs

arising from an autism diagnosis are as follows:

1. Being diagnosed with autism, in itself, generates a range information and support needs,
collectively referred to a psychoeducation needs. Meeting these needs should be
regarded by policy makers and commissioners to be as important as timely access to an
autism-specialist diagnostic assessment. This is because leaving such needs unrecognised
and unattended has the potential to have a range of adverse impacts.

2. There are multiple points along the diagnostic pathway where services need to recognise
and attend to psychoeducation needs, see Figure 6. Chapters 7 - 9 offer specific
recommendations on the implementation and delivery of this pathway. We note that,
whilst evidence generally supports group-delivered psychoeducation programmes,
groups present additional challenges for autistic adults. Thus services should have the
resource and capacity to deliver the programme via one-to-one sessions if required.

Figure 6: Meeting the psychoeducation needs associated with being diagnosed

with autism: key interventions and practice across the diagnostic pathway

36
3. A key element of this pathway is the psychoeducation programme, a type of intervention
applicable to any new diagnosis and with good evidence of benefit. Whilst we have identified
a small number of autism psychoeducation programmes, none can currently be endorsed as
a model programme. Thus investment in the development and evaluation of a ‘model’
psychoeducation programme for adults diagnosed with autism is required. Such work should
build on existing programmes and practices, be informed by findings from this project, and
developed by autistic adults and autism practitioners.

Finally, we note that this project’s focus was on one element of post-diagnostic support:
meeting the information and support needs which arise as a direct result of an autism
diagnosis. This should not be taken to imply that other components of autism-specialist post-
diagnostic support are not required. The current NICE guideline, and national policy and
strategy documents, make clear recommendations regarding the different components of
multi-agency, autism-specialist post-diagnosis support required, with more recently
published research supporting this position.

37
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 Appendix 1: Characteristics of autistic adults involved in consultation work

Age
Range 21-64 years
Median 39 years
Age when first diagnosed
Total sample (n=26) Range = 1- 61 years, median = 33 years
Diagnosed > 18 years (n=22) Range = 19- 61 years, median = 40 years
Diagnosed < 18 years (n=4)1 Range = 1-9 years, median = 6 years
Years since diagnosis
Total sample Range 1-26 years, median 6 years
Diagnosed > 18 years Range 1-16 years, median 4 years
Diagnosed < 18 years Range 21-26, median 23 years
Attended adult autism psychoeducation group?
No 16
Yes 10
Gender
Male 13
Female 9
Agender 1
Agender/neutrois 1
Non-binary 1
Non-binary trans masculine 1
Ethnicity
White British
South East Asian
Mixed ethnicity
1
One individual diagnosed in childhood and re-diagnosed as an adult

42