Improving Substance-Use Services for Autistic Adults: Insights and Recommendations from Autistic Adults

Abstract

Purpose:

We aimed to explore autistic substance users’ experiences and their recommendations for improving substance-use services.

Methods:

We conducted an online cross-sectional questionnaire survey with autistic adults, either self-identifying or formally diagnosed, who reported past or current substance use. We applied reflexive thematic analysis to identify differences and similarities across their diverse narratives.

Results:

A total of 475 participants completed the questionnaire. Participants shared varied experiences with substance-use services, but three key themes emerged as follows: challenges with service accessibility, gaps in providers’ knowledge about autism, and the need for harm reduction practices tailored to autistic individuals. Participants provided numerous recommendations to enhance the accessibility and appropriateness of these services, emphasizing the value of personalized, inclusive, and neuro-affirming care.

Conclusion:

Participants recommended that substance-use services improve accessibility by incorporating autistic-led training and adopting trauma-informed, harm-reduction approaches focused on personalized care. We suggest that future research include more in-depth interviews to cocreate resources for both substance-use service professionals and autistic individuals who engage with these services.

Community Brief

Why is this important?

Many autistic adults who use substances, such as drugs or alcohol, do so to cope with challenges related to mental health, such as anxiety and depression. This behavior can lead to even more severe mental health issues over time. By better understanding their reasons for substance use and the challenges they face, we can create support services that truly address their unique needs.

What did the researchers want to find out?

We wanted to explore autistic substance users’ experiences with substance-use-related services, including barriers to care and the kinds of support they found helpful or unhelpful. By gathering these insights, our goal was to identify ways to improve services for autistic substance users, so they better meet their needs.

What did the researchers do?

We created an online survey with input from autistic people who have lived experience with substance use. A total of 475 autistic adults, both self-identified and formally diagnosed, took part in the survey. We asked them about their substance-use habits, reasons for using substances, and their mental health conditions, as well as their experiences with substance-use services.

What did the researchers find?

Most participants reported serious mental health issues, with 87% experiencing anxiety, 75% having depression, and many also identifying as ADHD. Many also struggled with chronic pain. People used substances for different reasons. Some used them to cope with anxiety, depression, or sensory overwhelm. Others used them to help focus, boost energy, or feel more confident in social situations. Alcohol, marijuana, and stimulants were the most commonly used substances.

The study identified three main themes in people’s experiences with substance-use services. First, many found services difficult to access. Loud, overwhelming environments, unclear communication, and group therapy made it hard to get support. Some struggled to get accommodations such as quiet spaces or different ways to communicate.

Second, participants felt professionals lacked understanding of autism and substance use. Some were denied treatment unless they were already sober, while others faced stigma, miscommunication, or a lack of trauma-informed care.

Third, participants wanted services to be autism-friendly, flexible, and respectful. They called for harm reduction approaches instead of strict abstinence programs, better awareness of autistic experiences, and more autistic professionals shaping services to meet their needs.

What’s new about these findings?

Our study highlights the key barriers autistic adults face in accessing substance-use services and offers practical recommendations for creating more inclusive and effective support. The focus on neuro-affirming, trauma-informed, and personalized care represents an important step toward better outcomes for autistic individuals.

What are the weak points of the study?

Most of the people who took part were White and of a similar age, so our findings might not apply to all autistic people. We also used convenience sampling, which means that participants were mostly those who were already engaged with autism-related online communities. This could mean that some autistic people who do not have access to these spaces, or who face different challenges, were underrepresented in our findings. Also, since participants reported their own experiences, there could be some differences compared with what a doctor or professional might find.

How can this help autistic adults?

Our findings show that substance-use support services for autistic adults who use substances need to be more flexible and personalized to their needs. This means creating quiet, sensory-friendly spaces, offering different ways to communicate, and providing individual support when needed. It is important for services to understand the challenges autistic people face, such as masking who they are, dealing with trauma, or managing anxiety and ADHD. By involving autistic people in planning and improving substance-use services, we can make sure the help they receive truly works for them. Listening to their experiences can help create services that are kind, respectful, and effective.

Introduction

Autistic people can be overlooked in substance-use care due to continued prejudice that assumes a childlike innocence of all autistic individuals.¹ However, autistic people are at higher risk of substance-use disorder (SUD),^2–4 alcohol abuse,⁵ and substance-use-related issues than the general population.⁶ In a 26-study review by Ressel and colleagues,⁷ autistic substance-use rates ranged from 1.3%⁷ to 36%.⁸ Inconsistencies in reporting methods, variability in sample characteristics (including age, sex, and ethnicity), differing recruitment settings, and diverse substance-use assessment methods complicate understanding these varied findings.⁹ Further complications arise from the dearth of research on autistic individuals’ understandings of substance (mis)use and addiction, raising questions about the construct validity of these terms—specifically, how well theoretical concepts such as substance use and addiction align with the lived experiences of autistic people. Despite varied findings of prevalence rates, more autistic clients are presenting for treatment at specialized addiction centers¹⁰; subsequently, there remains a need to develop effective substance-use care for this population.

Substance use among autistic individuals is a complex and multifaceted issue. A growing area of research explores the potential explanations for some autistic people’s use of substances.^3,11–13 In a study by Weir and colleagues,¹¹ 12 autistic individuals reported using recreational substances to manage behavior and mental health difficulties—approximately nine times more than their non-autistic peers. Autistic people can use substances for different reasons than non-autistic populations, including to regulate emotions, manage sensory sensitivities, and mitigate executive functioning difficulties.¹¹ Autistic people may also use substances to protect their psychological safety by masking “acceptable” social, emotional, and physical actions.¹² Some autistic individuals may use substances to mask stimming¹³ and to hide sensory overwhelm.¹² Masking has been linked to poorer mental health, fatigue,^14–16 depression,¹⁷ and greater risk for suicidality among autistic adults.¹⁸ These factors, in turn, can lead to a higher risk of substance use.³

External to self-medication,¹⁹ autistic individuals are also at risk of forced or accidental use of drugs, suffering multiple adverse childhood experiences, including neglect and abuse, and substance use in the immediate family.^20–22 Autistic people may use substances to cope with mental health problems while putting themselves at further risk of other vulnerabilities such as eating disorders.²³ These experiences are often overlooked in traditional models of substance use. While policy guidelines in the United Kingdom—such as those issued by the National Institute for Health and Care Excellence²⁴—acknowledge the need for service adaptations to meet the needs of autistic populations, they frequently offer broad and ambiguous recommendations without clarifying what such adaptations should entail. This ambiguity risks further marginalizing autistic individuals by implying that their patterns of substance use do not conform to the “standard” profiles on which conventional services are based.

Furthermore, traditional substance (mis)use frameworks—most notably the diagnostic criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)²⁵ and the International Classification of Diseases (ICD-10)²⁶— have long served as the basis for defining and diagnosing SUDs. These criteria typically focus on clinical features such as tolerance, withdrawal, loss of control, and the adverse social and occupational consequences of substance use.^25,26 These medical approaches situate the blame with clients for substance use and disengagement in treatment,²⁷ including autistic clients¹⁸ despite their heightened vulnerability to further harm while engaging in substance use³ and their holistic needs related to housing, employment, mental health, and daily occupation.²⁸ Frameworks that overlook the unique ways autistic individuals experience and engage with substance-use services reinforce the need for services to adapt their approaches based on autistic individuals’ perspectives on treatment.

Substance-use services would benefit from recognizing how autistic motivations not only influence substance use but also impact treatment engagement and outcomes. Autistic people’s experiences of inaccessibility within health care continue to be well documented,^11,29–31 with a growing understanding of autistic client’s needs within substance-use services,^32,33 including the work of McKowen and colleagues³² who created a protocol focused on individual therapy for autistic young people who have SUD. However, their manualized behavioral intervention is based on the pathology paradigm of treating symptoms of autism as well as SUD. Similarly, Helverschou and colleagues³³ explored how SUD outpatient clinics might be improved by monthly “autism spectrum disorder (ASD) education” for professionals and adapted cognitive behavioral therapy (CBT) for autistic clients. Personalized group CBT sessions were found to support “positive effects on both symptoms of ASD and SUD.”³³ Despite the potential effectiveness of both studies, they support the notion of autism as a pathology that needs remedy.

Using the pathology paradigm³⁴ within substance-use service research, policy and practice frame autistic patients as needing to be healed of both their substance use and their autism. We challenge this issue by adopting the neurodiversity paradigm, which appreciates being autistic as a difference with the potential for specific support needs.^34,35 Throughout this study, we use our lived experiences to create what we believe to be a first—an article written by those with lived experience that centers autistic substance users’ experiences and perspectives to make recommendations for more effective and inclusive substance-use services.

Methods

We conducted an online one-time cross-sectional questionnaire survey, coconstructed with autistic people. To ensure that the research was relevant and respectful to the community it aimed to serve, we led a consultation with autistic community members within our network capturing varied lived and professional experiences of autistic substance use. Our participants were autistic adults aged 18 and older, either formally diagnosed or self-identified, who reported prior and/or current substance use. We asked participants to disclose whether they currently self-identify or have a diagnosis of depression, anxiety, or attention-deficit/hyperactivity disorder (ADHD). We recruited during July and August 2023 via our social media accounts and through the London Autism Group Charity, using convenience sampling as a pragmatic approach to recruit autistic adults with experience of substance use.

Materials and procedures

In this article, we analyze data from a broader study aimed at capturing autistic peoples’ use of substances and substance-use services. Here we focus on the qualitative questions on experiences with substance-use services. We prompted participants to disclose their age (with specified age ranges), gender (open-ended to accommodate all gender identities), and ethnicity (also open-ended to ensure inclusivity). We asked participants to confirm their autistic identity, whether through self-identification or formal diagnosis. The term “autistic people” will be used throughout this article to include both formally and self-diagnosed participants.

To capture a wide range of personal experiences, perspectives, and backgrounds, we used open-ended questions, ensuring that participants met the study’s inclusion criteria.

We included open-ended questions to explore the perceived “positives” and “negatives” of participants’ substance-use experiences. We added additional questions about experiences with substance-use services, including the perceived effectiveness of such services, barriers to engagement, and suggestions for improvement.

We developed the survey through an iterative, collaborative process with autistic individuals who have lived experience of substance use, ensuring the language and content were inclusive, respectful, and relevant to their experiences. Consultees had differing professional backgrounds, including social work, academia, and mental health practice. The consultation group included five White cisgender women and one nonbinary person between ages 30 and 55. We strengthened this with an open-call consultation via D.G.-H.’s social media platforms allowing for greater diversity.

These consultations lead to significant alterations to the survey. The survey was originally planned to be wholly quantitative to further investigate autistic self-medication through substances.¹¹ However, through consultation, qualitative questions were added to allow participants to share their experiences with D.G.-H., a trusted community advocate. Furthermore, the open text boxes, suggested in the consultation, allowed for better accuracy, accessibility, and representation. Using open-ended questions allowed for obtaining more nuance and diverse stories, in line with the Academic Autism Spectrum Partnership in Research and Education framework (AASPIRE).³⁶ The consultation has allowed for more complex data sets.

Ethics

The University of Bedfordshire’s Institute for Health Research Ethics Committee approved the study. We provided participants with a detailed participant information form that described the study’s aims, the voluntary nature of participation, confidentiality measures, and their right to withdraw without penalty. This form also outlined the potentially sensitive nature of the lines of inquiry within the questionnaire.

We also established an arrangement with the London Autism Group Charity to provide support to participants who may encounter any emotional distress during the survey. This support mechanism was made available to all participants, ensuring they had access to necessary assistance throughout their participation in the study. After reading the information form, we provided an informed consent form summarizing the nature of involvement.

We also considered the well-being of the research team. T.A. searched the qualitative data to ensure that K.M. was not met with distressing information, which pertained to their own experiences. K.M. also spaced out the qualitative analysis to support their self-care. In recognition of the sensitive nature of this research, the research team engaged in reflexive practices to ensure an ethical and thoughtful approach to the study. We maintained awareness of how our perspectives and positionalities influenced the research process.

All collected data were treated with strict confidentiality and gathered through Google Forms. The data were stored on Google’s encrypted and password-protected servers, following Google’s security standards. Data management complied with the General Data Protection Regulation and the Data Protection Act, 2018.³⁷

Analysis

We applied reflexive thematic analysis^38,39 to identify differences and similarities across a diverse range of narratives. We took an experiential position to thematic analysis focused on participants’ lived experiences, perspectives, and needs.^40,41 We identified repetition, recurrences, and forcefulness of themes through a six-step approach: reading the data, creating initial codes, looking for themes, reviewing themes, naming and defining themes, and producing an overall report.^38,39,42 Codes were initially developed through a process of open coding led by K.M., who identified key concepts and patterns from the narratives based on their lived experience. As a full team, we then engaged in discussions to explore the meanings behind the codes, ensuring that themes were grounded in the data while capturing the diversity of participants’ experiences. These discussions were iterative, allowing for refinement and alignment of themes. C.P. played a supervisory role throughout, steering the main steps of the analysis and ensuring the process remained systematic and rigorous.

Three members of the research team are autistic and have a history of substance use; the lived experiences shaped the interest and lines of enquiry in the present study. The lived experiences have been reflected throughout the analysis and presentation of data, appreciating that subjectivity is a resource of knowledge production that has shaped the findings of this study.^38,39 A record was kept of the data collection and analytical decisions, to ensure transparency and replicability. This enhanced the study’s relevance, authenticity, and applicability.

Through reflexive thematic analysis,³⁹ we continuously reflected on our positionality, ensuring our lived experiences enriched the analysis. Our reflexive practices included journaling throughout the coding process, where we documented our thoughts and reflections on how our identities and experiences might influence the interpretation of the data. Interpretative phenomenological analysis (IPA) has been used within previous substance-use research^40,41; however, we decided against IPA as we do not believe researchers’ experiences always cause bias.^43,44

We used a neurodiversity-affirming framework throughout the analysis, considering the strengths and needs of our neurodivergent team (autistic, ADHD, mental health, chronic illness), as well as our lived experiences. We analyzed in stages to allow us to fully process and understand the data, some of the analysis was done by hand and the rest was typed following the needs of research team members. As researchers who champion neuro-affirming practice, we must lead by example.

Findings

Our study comprised 475 participants. Most participants reported experiencing anxiety (87.37%), depression (75.16%), and identified as ADHD (80.42%). See Table 1 for a detailed summary of participant demographic characteristics, including age, gender, and ethnicity distributions. See Table 2 for representative quotes.

Table 1.

Participant Background Characteristics

Background characteristics	N	%
Age group
18–25	32	6.7
26–35	111	23.4
36–50	247	52
50+	85	17.9
Gender
Female	293	61.7
Nonbinary and gender diverse	109	22.9
Male	73	15.4
Ethnicity
White/Caucasian	430	90.47
Mixed/other	15	3.16
Hispanic/Latinx	6	1.26
Black	5	1.06
Asian	4	0.84
Indigenous/Native	3	0.64
Jewish	2	0.42
Missing data	10	2.15
Co-occurring phenomena
ADHD	382	80.42
Depression	357	75.16
Anxiety	415	87.37

ADHD, attention-deficit/hyperactivity disorder.

Table 2.

Representative Quotes for Identified Qualitative Themes

Theme 1: Service accessibility and competence	Representative quotes
Theme 1.1: Communication difficulties, lack of accommodations and adjustments	“Couldn’t deal with social and group aspects. Felt alienated.” “[Treatment] ended prematurely as they realised, I was Autistic and told me their program wasn’t suitable.” “Detox inpatient bed was turned down because of my autism and mild [learning disability] needs but it’s meant I’ve not got anything different instead.” “No rehab facilities that were charity / government funded could manage my complex needs, meaning that I’ve never had the support that has been repeatedly said would be effective over years.” “[Providers] were not accommodating to various sensory needs.”

Theme 1: Service accessibility and competence

Representative quotes

Theme 1.1: Communication difficulties, lack of accommodations and adjustments

“Couldn’t deal with social and group aspects. Felt alienated.”

“[Treatment] ended prematurely as they realised, I was Autistic and told me their program wasn’t suitable.”

“Detox inpatient bed was turned down because of my autism and mild [learning disability] needs but it’s meant I’ve not got anything different instead.”

“No rehab facilities that were charity / government funded could manage my complex needs, meaning that I’ve never had the support that has been repeatedly said would be effective over years.”

“[Providers] were not accommodating to various sensory needs.”

Theme 2: Inadequate professional knowledge and understanding	Representative quotes
Theme 2.1: Professionals’ lack of knowledge of substance use	“I wish any provider, but substance abuse providers especially since this is a life-or-death situation, would be knowledgeable on different options to help people with substance abuse problems.” “If “substance use treatment” means a psychiatrist or PCP prescribing and monitoring use of, say, Xanax, painkillers, and stimulant medication, then having a safe supply, trusted knowledge, and proper treatment of conditions was very helpful.” “I work for an autism support facility-it infuriates me that “specialists” won’t treat people unless they’re clean; I’ve challenged several directly, pointing out that they’re wanting clients to drop their coping mechanism without offering any replacement. It’s contrary, unhelpful, and dangerous.” “I can’t just give up a substance I’ve been using for emotional and sensory regulation for around 10 years. That would be an extremely difficult process, and I’ve not heard of anywhere equipped to help with that long term.”
Theme 2.2: Professionals’ misunderstanding of autistic embodiment in care	“They [practitioners] were useless. They assumed my not engaging as me not wanting to sober up instead of asking me what it was I found difficult and finding a way to work with me.” “It’s not that I didn’t want to do the thing, it felt like too much of a demand and was too overwhelming for me to proceed without support.” “All the social aspects and the neuronormative assumptions for addictive behaviour.” “Realize that withdrawal is probably going to be worse because of sensory issues on top of the [usual] effects.” “We are individuals who may not benefit from standard treatments, and our substance abuse usually is just a form of self-medication, especially for those who have been diagnosed late in life with no better form of intervention.” “I didn’t engage so they sent me a letter to discharge me and wiped their hands of me instead of finding ways to get me to engage.”

Theme 3: Reducing harm through trauma-informed, neuro-affirming practice	Representative quotes
Theme 3.1: Harm reduction and moving beyond one-size-fits-all approaches	Assumption all drug use is harmful, indoctrination into abstinence only thinking, buying into the social stigma inherent in prohibition instead of naming it.” “Excessive cannabis use made me a bit detached, but not nearly as bad as the Citalopram I was put on, which had me sleeping 12 or more hours each day.” “I do not want to be alive if I cannot have an escape from my brain due to many large stressors in my life. If it wasn’t for drug use, I would have ended my life by now.” “Understand that it can become such an embedded routine not always completely bad and some just want to learn to use a lot less and not be enforced to go cold turkey if a person isn’t ready. Not to be threatened that all help and daily support will be taken away if you don’t go cold turkey.” “If they [providers] worked with harm reduction, I think it could build trust and honesty to a greater extent. Drug users need to stop getting punished. I feel like a hypocrite to be dependent on a narcotic approved by a doctor, but see others be denied therapy because they smoke cannabis.”
Theme 3.2 Adopting neuro-affirming trauma-informed care approaches	So much ignorance and ableism, systemic inaccessibility and baked-in prejudices of all kinds (including being distressed by witnessing the ones that don’t personally apply to me). In my case there has never been any type or level of treatment that was accessible.” “It was just another form of neuronormative conformity where they tried to diagnose me with borderline personality and told me I would never stay off of drugs with the attitude that I had, or I would be the best patient they ever saw. It felt like nobody understood me.” “The 12-step model I found really frustrating. The idea of being powerless didn’t sit well with me at a trauma survivor who had plenty of experience with powerlessness.” “I had a lot of childhood trauma that was not dealt with, and I most likely have alexithymia.” “I’m sure if I was offered support as an Autistic young person relying on alcohol to verbally communicate it would have helped had it been delivered in a neuro-affirmative way however I doubt this kind of support existed.”
Theme 3.3 Reduce shame and stigma	“Do not treat substance use as something shameful/a moral failing. One, this is a very counterproductive and harmful mindset that many treatment programs push onto all they treat. TwoI think autistic individuals are more likely to see the attempts by treatment programs to justify this sort of perspective as unconvincing and harmful.” “From what I’ve observed in myself, and other autistic people typical social norms and stigmas are far less likely to be automatically internalized. Our ethical models seem much more consciously independently created. This often puts us at odds with the typical areas where society stigmatizes a certain behaviour or condition and thus likely to find shame-based therapy ineffective and offensive.” “ND struggles such as keeping a tidy home or having the resources to maintain one needs to be understood in a more compassionate way.” “Be strengths-based and help empower individuals rather than shame and blame.”

Although participants’ experiences with substance-use services varied (13.9% having been under a specialist substance-use treatment service), we identified three main themes in the current study: service accessibility and competence, inadequate professional knowledge and understanding, and the recommendation of reducing harm through trauma-informed, neuro-affirming practice. Neuro-affirming practice includes professionals reflexively considering the beliefs, values, and paradigms that are reflected in their choice of language and interventions,³⁶ to adapt common treatment methods so that they are more effective for autistic clients. Participants also provided a range of recommendations to improve the accessibility and effectiveness of substance-use services.

Theme 1: Service accessibility and competence

Participants spoke about accessibility issues when they accessed (or tried to access) substance-use services. Several participants shared that the service providers lacked a choice of communication methods and that group sessions were particularly inaccessible.

Communication difficulties, lack of accommodations, and adjustments

Participants shared that substance-use service providers did not offer accommodations and adjustments around social, emotional, and sensorial needs. One participant shared that substance-use services should be designed for autistic people as “The intersections of autism and addiction are underserved in health care.” They recommended improvements in the sensory environments of substance-use settings, such as having an unoccupied room for quiet and calm when clients feel overwhelmed. One participant shared that in early recovery everything “Feels ten times louder and brighter” and that forced eye contact was uncomfortable.

Similarly, substance-use services gave limited choices for communication methods and engagement. Understanding different communication styles, and how these can be accommodated, would benefit autistic clients. One autistic participant shared that communication was “The biggest barrier when my autistic brother tried to access services for substance misuse.” Participants shared that they would benefit from clear expectations, more specific questions around use patterns, and more time to process information.

Choices on how to communicate and refer themselves for support were key to participants. Options that participants referred to included telephone, videoconference, email, and coming into a substance-use service to talk to someone in person. One participant said that they would benefit from videoconference appointments, which they suggested would be “Easy and nearly free to implement.” Issues were also raised around multiple points of contact for substance-use care with unclear expectations of who to contact and when. One participant described this as “Being passed from one person to another with the autistic person having to do the chasing,” echoed by another participant who suggested, “Don’t make us jump through hoops and go to a million people before actually receiving therapy or meds.” In many cases, this overly bureaucratic process stopped participants from accessing care, which may account for the minority of study participants who reported engaging with substance-use services.

Despite the success of group treatment for autistic clients with SUD in previous work,¹⁰ participants in the current study shared that group work was “Uncomfortable” and “Unhelpful.” One participant shared that they should not be judged on how well they act as part of a group “Whilst going through autism hell having five social activities a day,” while another participant described group work as a “Horrific nightmare.” Options to do one-on-one work or access substance-use services from home may help alleviate some of these issues. Some participants also suggested autistic-specific substance-use support programs, days out for autistic clients, and facilitators who are autistic or at least neuro-affirming. Participants suggested that these sensory and communication adjustments should be offered from the start for all clients, regardless of any diagnosis they may or may not have.

Theme 2: Inadequate professional knowledge and understanding

Participants experienced professionals who had a limited understanding of substance use and autistic embodiment (how autistic people interact with and make sense of the world).⁴⁵ Some participants described having experienced inadequate care, while others were worried about accessing substance-use services due to this perceived lack of knowledge.

Professionals’ misunderstanding of autistic embodiment in care

Participants shared that they wished substance-use providers understood “Why we would choose to use substances in the first place. Such as understanding the societal structures which can put us at a disadvantage and severely harm our mental health” and that autistic people have a “Significantly higher possibility of pre-existing MH [mental health] concerns, particularly cPTSD.” One participant shared “Many of us are using because we are being abused.”

Several participants shared that they use substances to “Mask” their autistic embodiments and use them as a “Coping strategy for living in a society that is loud, abrasive, and full of unspoken rules.” Participants made recommendations for the growth of professional knowledge, based on the reasons they use or have used substances: “Recognize that drug use may be treating symptoms of the mismatch between autistic/ADHD”, “We use substances to feel comfortable in our own body, substances remove that social awkwardness” and “Our need to control chaos can sometimes drive us to maladaptive behaviour […] some of us self-medicate for anxiety, but others for executive dysfunction.”

In addition, participants revealed that “Autistic people can experience pain differently [to non-autistic people] and can often struggle in communicating this” and “Some substance use is because we need help processing and tolerating certain sensations and environments.” To understand and communicate emotional and physical sensations, participants suggested that autistic clients would benefit from interoception awareness training within their substance-use care. One participant shared they wanted to “Learn how my body is feeling so I could recognise when I was becoming overwhelmed, anxious, scared, over-stimulated, angry…” and suggested interoception awareness training would help them with their substance-use recovery.

Participants shared that substance-use services were inaccessible due to inconsistent appointment times and days, being judged on autistic behaviors, and miscommunications being framed as the autistic client’s fault. Participants explained that their sensory experiences differed from non-autistic people and that professionals needed to be more accommodating to their sensory needs. Participants suggested that substance-use professionals should “Educate themselves on different neurotypes and how they interact with and impact the mechanisms of addiction.” They suggested that specific training around autistic embodiment would help with autistic people’s access to, and success within, substance-use services, appreciating that “Success” may look different for autistic clients than non-autistic clients.

Many participants recommended that autistic people with experience of substance use were the best to lead training as the “Emotional processes and triggers that lead an autist to seek medication […] may not be easily understood nor readily empathised with by a neurotypical treatment provider.” Several participants suggested that autistic-trained specialists in substance-use services would ensure autonomy and provide care “Tailored to the person” while appreciating that withdrawal for autistic people is “Probably going to be worse because of sensory issues on top of the [usual] effects.” Participants shared that working with autistic professionals who “Understand how being autistic changes my experiences” would benefit their recovery and allow for greater understanding and adjustments.

Theme 3: Reducing harm through trauma-informed, neuro-affirming practice

Participants suggested that substance-use services should focus on harm reduction through taking a trauma-informed approach that reduces shame and stigma associated with substance use.

Harm reduction and moving beyond one-size-fits-all approaches

Participants recommended that substance-use services focus on harm reduction instead of a one-size-fits-all abstinence-based approach. One suggested that services “Get rid of the all-or-nothing approach [and] invest in harm reduction principles with enthusiasm and rigour.” This was echoed by another who shared: “My country has a very strict zero-tolerance policy and doesn’t work with harm reduction […] if you can’t talk honestly then you can’t prevent it from getting worse on its own.”

They suggested that harm reduction practices would build better trust and honesty between substance users and professionals. Some participants shared that professionals should be more knowledgeable about the different options to help with substance use and to work with all those who try to access their services. One participant, who works for an autism support facility, said they get infuriated when “Specialists” refuse to treat clients who are not already sober. This leads potential clients to “Drop their coping mechanism without offering any replacement,” putting autistic clients in danger of harm. They also suggested that counselors can be unethical by telling clients that they are unlikely to stay sober: “It’s bad enough that most people will relapse AT LEAST [sic] once. They do not need the added trash of having multiple counsellors be unethical and telling patients that they will not stay clean.” Another participant suggested that professionals who prescribe and monitor the use of medications as part of substance-use treatment must ensure “A safe supply, trusted knowledge, and proper treatment of conditions.”

Furthermore, harm reduction would allow autistic clients to use substances that they find helpful. One participant recommended that substance-use professionals need to acknowledge that some substances are beneficial to some autistic people, including his daily dosage of 1 mg of THC, which “Has been life-changing in that I can consistently sleep for the first time in my life.” This view was shared by another participant: “Some [autistic people] just want to use a lot less and not be forced to go cold turkey.”

Participants also suggested that substance-use services need to make aftercare more appropriate and consistent to help clients “Deal with the aftermath” of recovery, whether they recovered in substance-use services or not. One participant shared they would not be able to access such help because “I can’t just give up a substance I’ve been using for emotional and sensory regulation for around 10 years […] I’ve not heard of anywhere equipped to help with that long term.”

Adopting neuro-affirming trauma-informed care approaches

Many participants shared how autistic clients would benefit from personalized care, which appreciated all elements of their identities, contexts, and embodiments. Unfortunately, none of the participants received substance-use treatment that was neuro-affirming. Substance use and recovery may look different for autistic people compared with non-autistic people, as one participant suggested “[Professionals need to] understand there is a link between substance use and neurodivergence, and that addiction and recovery will look different.” They suggested that stability while accessing substance-use services is more important than the process or type of service as they can “Just become something to be addicted to instead.” Another participant suggested that they could have received help with their alcohol use much earlier if substance-use services were “neuro affirmative.”

One participant shared “We are individuals who may not benefit from standard treatments, and our substance abuse usually is just a form of self-medication, especially for those who have been diagnosed late in life with no better form of intervention.” Participants suggested that harm reduction should run parallel to trauma-informed care (or “Trauma healing”) to understand the neglect, abuse, and other traumas many autistic people experience. As one participant shared: “[Providers need to] use trauma-informed practices. I believe substance abuse comes from trauma or lack of dopamine, or both combined.”

Trauma-informed care, participants suggested, should be underpinned by appropriate neuro-affirming practices. Training in this area, as mentioned above, was considered essential by some participants, one shared that they managed training as “An impoverished, unsupported, unmedicated AuDHDer, and took additional training in trauma-informed care, so I’m not sure what [a professional’s] excuse is.” Another participant shared that it took their local substance-use service “Over a year to get training on autism and trauma,” they suggested that professionals should “Understand the intersections between sensory processing, trauma, and autism.”

Furthermore, participants suggested that professionals should take a holistic approach and “Stop blaming the individual and look at society.” Some felt that judgments were being made about their neurology, life choices, and perspective, with professionals not recognizing the “Legitimate reason” that they use substances. Participants shared that taking a trauma-informed approach would allow professionals to understand autistic people who have been “Thrown into this world with a pair of boots but no straps.”

Reduce shame and stigma

Participants shared their stigma-related experiences of judgment, ableism, and shame within substance-use services. One suggested that stigma is part of the “Counterproductive and harmful mindset[s] that many treatment programs push onto all they treat.” They suggested that professionals should take a strength-based approach instead of shaming substance users. Overwhelmingly, participants wanted to change the guilt and shame-based model to improve outcomes for autistic clients:

“This phenomenon of making drug use out to be a shameful moral failing, and sobriety a moral, redemptive success […] Feeling like they are lesser for having used and redeemed but still having done something shameful in the past once they are sober damages the mental well-being of addicts which contributes to the likelihood for relapse and for that relapse to be more intense.”

Discussion

Through the neurodiversity framework,³⁴ our study reveals new insights into autistic people’s experiences with substance-use services, including inaccessibility, lack of provider knowledge, and professional stigma. Despite the minority of participants reporting engagement with substance-use services, all participants shared issues with primary health care, which is often the gatekeeper to such services.⁴⁶ Access issues within substance-use services included a lack of choice in communication methods, mandatory group sessions, a one-size-fits-all approach, and problems with the sensory elements of the service environment. Participants experienced professionals with a limited understanding of substance use and treatment and a gap in knowledge around autistic embodiment and oppression. We provide specific suggestions for service improvement within each of the major themes identified.

Improve service accessibility

Substance-use services need to provide quiet spaces in waiting areas and more natural lighting to help alleviate sensations that can be “Ten times louder and brighter” for autistic clients. By using the infrastructure created during the COVID-19 lockdowns in the United Kingdom,⁴⁷ services can offer videoconferencing treatment sessions. Videoconference sessions allow autistic clients to access treatment from the comfort of their own homes, minimizing social and sensory anxiety, especially around forced eye contact.⁴⁸

Currently, “12-step” programs³⁹ focus on group-based work due to their relative effectiveness and inexpensiveness.⁴⁹ However, group therapy is ineffective for some autistic people³³ due to professionals’ perceptions of disengagement and “inappropriate” behavior. Misperceptions of autistic clients’ engagement levels can be attributed to the double-empathy problem,⁵⁰ in which there is a breakdown in mutual understanding between people of differing dispositions. This can mean that autistic clients are blamed for miscommunications due to their perceived social communication difficulties.⁵⁰ Misperceptions of professionals and other clients can leave autistic clients at greater risk of exclusion and further substance use.⁹ Where possible, services should provide options for one-to-one, small-group sessions, and autistic-specific groups. Autistic-specific substance-use support groups could provide a space in which communication and sensory needs can be understood and adjusted; they would also minimize autistic clients from “Constantly getting the advice for NTs [neurotypicals].” Sessions of all sizes could follow the same guidelines as group work without the expectation of people sharing through spoken word or having to use eye contact. Allowing clients to move around and bring objects for comfort and to aid concentration could help make substance-use support sessions more neuro-affirming and effective. Checking understanding throughout sessions, and plainer language resources could also help autistic clients. Understanding and accommodating sensory and communication needs are an important part of making all health care settings safe for autistic people.^23,30

Providing clients with choices of communication methods would improve client-professional communication³⁶ enhanced by allowing extra time for autistic clients to process information and ask questions. Autistic substance-use clients should also receive appointment reminders ahead of time through different mediums so that they can choose what works best for them (this may include letters, text messages, or telephone reminders). Participants suggested that appointment times and days should be kept as consistent as possible to minimize anxiety and the burden of administration.

Substance-use services should offer sensory and communication accommodations to clients from the beginning of their treatment. This could be documented within their care notes to ensure everyone who works with them understands how to support their needs.

Expand professional knowledge and understanding

Participants in the current study reported that substance-use service professionals lacked knowledge of autistic embodiment, affecting their understanding of autistic clients’ social, emotional, and sensory needs. Professionals should improve their understanding and approach to different communication styles by engaging in regular, up-to-date training on neurodivergence. Participants suggested that training should be led by autistic professionals, especially those with lived experience of substance use. Training designed by autistic people is more effective in improving autism knowledge and minimizing stigma than training that includes first-person narratives.^51,52 Several autistic-led training providers could be utilized for this (e.g., Ausome Training [https://ausometraining.com/] and Aut Angel [https://www.autangel.org.uk/training/]). The key learning outcomes of such training should include breaking down stereotypes, understanding sensory profiles, and supporting communication needs.

In addition, participants emphasized that training should cover why autistic people may use substances, and what differences they might experience during use and recovery compared with non-autistic people. Autistic people may use substances to control sensory input,⁵³ reduce social anxiety,^27,54 and mask social communication differences.²² Some participants in the current study used substances to improve their self-esteem and functioning, suggesting that professionals need a clearer understanding of how substances affect specific individuals.

Participants suggested that autistic clients would benefit from interoception training and awareness sessions facilitated by substance-use services. These sessions would improve the clients’ understanding of physical and emotional responses to internal and external stimuli, which can be complex for some autistic people.⁵⁵ A better understanding of their physiology could help with treatment and sustained recovery; this could further support professional knowledge of why some autistic people use substances.

Furthermore, professional understanding and knowledge could be improved through service user involvement (SUI), in which service users are involved in all stages of service creation, including commissioning, early development, implementation, and delivery.⁵⁶ SUI sets a precedent for lived experience experts to deliver services, creating a mutually beneficial work environment in which clients get support and the service utilizes clients’ insights to improve global outcomes.⁵⁷ SUI allows for more appropriate delivery, understanding, and empathy than that of community-based participatory research, which does not always culminate in lived experience experts delivering services.⁵⁸ Involving autistic clients at all stages of service commissioning and delivery would improve accessibility, effectiveness of adjustments, and practitioners’ knowledge.

Reduce harm through trauma-informed, neuro-affirming practice

The theme of harm-reduction, trauma-informed, neuro-affirming practice is lengthier than others as it was endorsed by all participants. Professionals must appreciate the life circumstances that make autistic people seek out and use substances, including to heal from or avoid past trauma. Experiencing multiple adverse childhood experiences such as abuse, neglect, and family estrangement,²² as well as lacking social support,⁵⁹ places autistic people at higher risk of addiction.

Addiction and substance use are often seen as moral failings in which substance users are made to feel shame for their behaviour.⁶⁰ Professionals who use this moral framework perpetuate a cycle of shame and substance use, which can be particularly complex for autistic clients, as their neurocognitive style is already considered a source of shame under the pathology paradigm.³⁴ Equating substance use and autism as pathologies can dehumanize clients, making them internalize “Dirty” substance user⁶¹ and “Deficient” autistic narratives.³⁴ This shame can be solidified by negative experiences with general health care professionals, as one participant shared with Tansley and colleagues: “Many autistic people have had multiple traumatic experiences with healthcare professionals, and this is their starting point for the next appointment.”⁶² (p 50). When working with autistic clients, the shame of addiction is not the only trauma professionals must navigate.

Sobriety may not be the goal for some autistic clients (one participant in the current study continued to use THC for their insomnia after they had finished their substance-use treatment). Support during and after substance-use treatment may look different for autistic clients, as many autistic people experience isolation and seclusion.⁶³ Loneliness is significantly heightened for autistic substance users, meaning that social support networks are vital for effective treatment and sustained recovery.¹ Building and maintaining relationships in sobriety may be an overwhelming prospect for some autistic people, especially if relationships were part of the reason they first started using substances.²³ Lack of long-term care means autistic clients are not getting their substance-use care needs met. Creating strong, trusting connections with autistic clients is vital as these may be the only connections they have. Professional relationships built on personalized care, underpinned by service user involvement,⁵⁶ could allow for improved outcomes for autistic clients.

Strengths and Limitations

We needed to include self-identified autistic participants as many people experience barriers to formal diagnosis (including gender minorities) meaning they remain misdiagnosed or receive a diagnosis later in life.⁶⁴ This may account for the elevated number of women and gender-diverse people within our sample, together with the larger ratio of female-to-male followers of the author’s social media accounts (85% of Facebook followers and 73% of Instagram followers). Furthermore, as this study aimed to explore autistic individuals’ experiences within substance-use treatment services rather than establishing diagnostic validity, self-identification remained a relevant and appropriate inclusion criterion as it reflects how individuals who perceive themselves as autistic navigate and interact with these services, regardless of a formal diagnosis. While we chose self-identification to ensure inclusivity and a neuro-affirming approach, it may introduce variability compared with studies that use only formally diagnosed samples. We recognize that this decision reflects a balance between ethical inclusivity and methodological consistency.

Our use of convenience sampling may have introduced sampling bias, as participants were more likely to be engaged with autism-related online communities. This could have influenced the range of perspectives represented, particularly concerning individuals who cannot access online spaces and face additional barriers to participation. Furthermore, the cross-sectional questionnaire design provides a snapshot of participants’ experiences but does not allow for a comparison over time or follow-up questions.

Throughout this study, we used our lived experiences to create work written by those with lived experience that centers autistic substance users’ experiences and perspectives to make recommendations for more effective and inclusive substance-use services.⁶⁵ To our knowledge, this is the first study that suggests SUI of autistic clients in substance-use services.

Conclusion

Our study provides preliminary tangible suggestions and guidelines for substance-use service improvement based on the lived experiences of autistic substance users. It highlights the importance of professional understanding of autistic embodiment and oppression for effective treatment.^1,23 Our findings indicate that accessible, trauma-informed, and personalized substance-use services are essential. Such improvements could be made by involving autistic clients in the design and production of services, as well as in the design and production of staff training. Future work on potential disparities in substance-use services for autistic individuals would benefit from a non-autistic comparison group to validate findings. Future work would also benefit from a more significant proportion of participants who have engaged directly with substance-use services. This work could be enhanced by more in-depth interviews and longitudinal studies to cocreate resources for substance-use service professionals and autistic clients.

Footnotes

Authorship Confirmation Statement

The conceptualization of the study and study design was led by D.G.-H., ethics-related processes were led by C.P., and qualitative data analysis was led by K.M., with significant contributions from all other authors. C.P. supervised the overall study process and significantly contributed to the article writing, while K.M. led the article writing with assistance from all other authors. Community involvement was ensured through collaboration with the London Autism Group Charity and direct input from autistic individuals with lived experience. All authors provided feedback, edited, and approved the final article. The article has been submitted solely to Autism in Adulthood.

Ethics Approval

The study was approved by the University of Bedfordshire’s Institute for Health Research Ethics Committee. The procedures used in this study adhere to the tenets of the Declaration of Helsinki.

Consent to Participate

Informed consent was obtained from all individual participants included in the study.

Data/Code Availability

The datasets generated and analyzed during the current study are not publicly available due to ongoing research and future publications but are available from the corresponding author on reasonable request.

Author Disclosure Statement

The authors have no relevant financial or nonfinancial interests to disclose.

Funding Information

The authors did not receive support from any organization for the submitted work.

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