Treating depression in young people with neurodevelopmental conditions

Neurodevelopmental conditions are lifelong conditions that affect the brain and influence how people think, perceive the world, and interact with others. Examples include autism, learning disabilities (commonly referred to as intellectual disabilities in research), attention disorders, communication disorders, Tourette’s, dyslexia, dyspraxia, and so on. Up to 16% of children and adolescents have neurodevelopmental conditions (Zablotsky et al., 2019), though this is widely disputed, and it has been suggested prevalence rates are far higher due to under-diagnosis or misdiagnosis of neurodevelopmental conditions.

Children and adolescents with neurodevelopmental conditions are more likely to experience mental health problems (Alexander et al., 2021; Kumar et al., 2016; Lai et al., 2019; Larson et al., 2011; Maïano et al., 2018; Rydzewska et al., 2019). Yet we still know relatively little about preventing and treating mental health conditions in this group, and they are frequently excluded from research, especially those with multiple neurodevelopmental conditions. Typically, mental health research focuses on people with a single neurodevelopmental condition, such as a diagnosis of autism or learning disability. While this can help us to understand mental health within a specific neurodevelopmental condition, this does not reflect the reality that most people with neurodevelopmental conditions have more than one, potentially limiting the applicability of research to people with overlapping conditions.

Historically, there has been an over-reliance on medication for treating mental health problems in autistic people and/or people with learning disabilities (NHS England, 2019). Clinical guidelines from the National Institute for Health and Care Excellence (NICE) specify psychological therapies should be used as first-line treatments for depression (NICE, 2013, 2016, 2019), and these include cognitive behavioural therapy (CBT), guided self-help, counselling and other talking therapies (NHS website, 2021). Despite this, reviews on psychological treatments for depression in autistic children and adolescents and/or those with learning disabilities is limited.

This study aimed to address this gap by reviewing the evidence base for psychological interventions for depression in autistic children and adolescents and/or those with learning disabilities. They also aimed to review the experiences of autistic children and adolescents and/or those with learning disabilities receiving psychological interventions for depression, and the experiences of their families and the therapists delivering psychological interventions.

Children and adolescents with neurodevelopmental conditions are more likely to experience mental health problems, but are often excluded from research. This study aimed to review the evidence base for psychological interventions for children and adolescents with neurodevelopmental conditions.

Methods

The authors completed a systematic review including any studies on psychological interventions or psychosocial interventions (e.g., life skills training, lifestyle intervention) aiming to treat depression in children or adolescents (up to 21 years of age) with a learning disability and/or autism. Studies on other treatments for depression were excluded, in addition to those on psychological interventions not targeting depression or preventative interventions. Each study included was assessed for risk of bias using previously developed tools used in other systematic reviews.

Generally, systematic reviews assessing treatments or interventions focus on randomised controlled trials, however, the authors included a wider range of study designs in their review, such as pre-post single designs, clinical case reports, experimental designs and qualitative studies. This reflects the absence of randomised controlled studies on this topic, and the authors acknowledge randomised controlled trials are a crucial area for future research.

Results

Ten studies were included in the review: four clinical case reports and six experimental or quasi-experimental studies (one multiple baseline design study, two uncontrolled group design trials, and three controlled group design trials).

In the four clinical case reports there were five participants. One used psychotherapy and behavioural training for a young person with mild learning disability, the other three used different adapted versions of CBT for four young people with Asperger syndrome, an autism diagnosis used prior to the all-encompassing Autism Spectrum Disorder (ASD) diagnosis (American Psychiatric Association, 2013), primarily used for autistic people without co-occurring learning disability. All of these studies were assessed as high risk of bias.

The six experimental or quasi-experimental studies each focused on different treatments for different population groups, used different outcome measures for depression, and were assessed as moderate-or-high risk of bias. Treatments included:

Behavioural treatment targeting “depression behaviours” for one child with learning disability
Individual psychotherapy for 31 children with learning disabilities
A resilience building programme for 39 autistic children
A lifestyle physical exercise programme (assisted cycling therapy) for 49 adolescents with Down syndrome (a chromosomal condition which causes learning disability)
Two different group CBT programmes for 42 and 23 autistic adolescents.

So, what did they find?

All clinical case reports reported an improvement in depression following intervention, either by a reduction in depressive scores on screening measures or a “decrease in problem behaviours”
Most of the (quasi) experimental studies reported some improvements in depression, however one reported no improvement in depression, but did report improvements in aggression, emotion control and “autism symptoms”
Although medication was sometimes used alongside psychological interventions, their potential effects on treatment outcomes were rarely considered.

Only a small number of studies were found on psychological interventions for depression in autistic children and adolescents and/or those with learning disabilities. These suggest psychological interventions may improve depression in this group, however, the studies were mostly of low-quality and had moderate-to-high risk of bias.

Only a small number of studies (with moderate-to-high risk of bias) were found on psychological interventions for depression in autistic children and adolescents and/or those with learning disabilities.

Conclusions

Due to the small number of studies, their poor quality and moderate-high risk of bias, the authors state:

no conclusions can be drawn with any confidence about the suitability or effectiveness of any particular psychological or psychosocial intervention for treating depression in children and young people with intellectual [learning] disability and/or autism.

They also conclude there is a complete lack of information on the experiences of the children and adolescents who received psychological interventions, their families, or the therapists that delivered interventions. This is concerning as collaboration is particularly important for research developing or adapting interventions.

I have a personal interest in this as I’m autistic and have had depression since childhood. Psychological intervention may have helped me when I was young, but I was never offered it – or any mental health support – until I was 18, when I was first prescribed antidepressant medication. I found CBT really helpful, but only received it when I was 25 after self-referring to NHS psychological therapies services, prior to being diagnosed with autism at age 27.

Based on the state of the current research, no conclusions can be drawn about the effectiveness of psychological interventions for depression in children and adolescents with autism and/or learning disabilities.

Strengths and limitations

This study had strong methodological rigour. It was completed in-line with systematic review guidance and followed a pre-registered protocol (Gray et al., 2020). The broad inclusion criteria meant all relevant research was identified and included. There may be additional research on the use of psychological treatments not specifically targeting depression or preventative interventions that may have been informative to this area, however, that was out of the scope of this review.

The authors did not complete a meta-analysis combining the results because only a small number of studies were identified with moderate-to-high risk of bias. The limitations of this paper are due to the poor quality of the studies included, such as small sample sizes, high risk of bias, lack of control group, and non-random allocation. Furthermore, none of the studies included children who were autistic and had a learning disability; participants either were autistic or had a learning disability, indicating selection bias against participants with learning disabilities in autism research (Russel et al., 2019).

This review had high methodological rigour, however, the overall state of research on psychological interventions for depression in autistic children and adolescents and/or those with learning disabilities has methodological flaws, such as small sample sizes, high risk of bias, lack of control group, non-random allocation, and no studies included children with co-occurring autism and learning disability.

Implications for practice

Due to the poor scientific quality of current research on psychological interventions for depression in autistic children and adolescents and/or those with learning disabilities, the implications for practice are limited. However, there are clear implications for future research on this topic, such as:

Pilot studies developing or adapting psychological interventions
High quality randomised controlled trials to reliably evaluate treatments
Exploring the role of parents or caregivers as facilitators
Ensuring children with co-occurring learning disability and autism are included in research
Ensuring interventions are accessible for children with learning disabilities, especially those with severe learning disabilities who are often neglected in mental health research (Vereenooghe et al., 2018)
Developing appropriate outcome measures of mental health symptoms (Flynn et al., 2017).

Although I personally found CBT useful, I did experience challenges with it due to being autistic (albeit undiagnosed at the time!). For example, having to speak to a therapist on the phone prior to being put on the waiting list, a large focus on verbally communicating mental health experiences, especially due to difficulties identifying and describing my emotions, the expectation of maintaining eye contact, difficulty processing verbal information, and the sensory environment (e.g., buzzing light). I was extremely lucky my therapist was attuned to my difficulties and put adjustments in place to help, such as getting me to bring written notes, not focusing their eye contact on me, and giving me extra sessions. A recent report by Hallett and Kerr (2020) highlights other autistic adults experiences of counselling and accommodations or approaches that may help.

It’s important to highlight that I don’t have a learning disability, and people with learning disabilities may experience different challenges accessing psychological interventions for depression, which is why it’s crucial they are not excluded from research. While research on this topic continues, ensuring therapists are aware of the potential challenges that children and adolescents who are autistic or have learning disabilities may face is vital, so they can consider adjustments or accommodations to better provide psychological interventions to them.

Practical implications are limited due to the poor scientific quality of the current research, but future research areas were identified by this review. In the meantime, ensuring therapists are aware of the potential challenges that autistic children and/or those with learning disabilities may face is vital.

It’s vital that we ensure therapists are aware of the potential challenges that autistic children and/or those with learning disabilities may face.

It’s time to #EmbraceComplexity

My project with Embracing Complexity, a coalition that brings together 61 neurodevelopmental and mental health organisations, centres on the issue of mental health research typically focusing on one neurodevelopmental condition and excluding those with multiple neurodevelopmental conditions. The purpose of our project was to explore barriers and opportunities in transdiagnostic research, with the aim of facilitating the completion of future research spanning across multiple neurodevelopmental conditions and mental health. In the project we:

Reviewed research priorities and identified research questions that are important to multiple neurodevelopmental conditions
Identified barriers and enablers of transdiagnostic research through interviews with researchers and exploration of pre-existing research
Established a network of researchers and organisations interested in future research collaboration across neurodevelopmental conditions and mental health.

We identified 41 research priority setting exercises for neurodevelopmental conditions, including autism, learning disabilities, epilepsy, ADHD, complex communication needs, developmental language disorder, and so on. As you’d expect, we found a diverse range of research priorities in these. Even so, it was strikingly clear most related to supporting people with neurodevelopmental conditions in various aspects of their lives, such as physical health, mental health, communication, social care, employment, and education.

Our discussions with 19 researchers have shed light on the challenges they face conducting research spanning across neurodevelopmental conditions and mental health. For example:

The existing evidence base typically focusses on one condition or unrepresentative samples, and there are difficulties recruiting and enabling the participation of people with different neurodevelopmental conditions due to a lack of validated mental health measures across different and co-occurring neurodevelopmental conditions
Siloed approaches to research, practice, and funding were also reported as challenges
Researchers also shared exciting ideas on how to tackle this issue and move towards a transdiagnostic approach to neurodevelopmental and mental health research going forward. For example, researchers suggested bringing together researchers with different neurodevelopmental condition expertise and changing how we look at neurodevelopment, moving away from focusing on specific conditions or labels to looking at neurodevelopment more broadly.

A report sharing our findings will shortly be publicly available on Embracing Complexity’s website and social media (Twitter and Facebook).

Join the Embracing Complexity Research Network

Researchers are welcome to join the Embracing Complexity Research Network – a group of research organisations and individual researchers with a shared interest in improving the lives of people with neurodevelopmental conditions. Please email Georgia Harper (Embracing Complexity Lead) for information: Georgia.Harper@autistica.org.uk.

We’ve also set up a special interest research group Embracing Complexity in Neurodevelopmental Conditions and Mental Health with funding from Emerging Minds. It will bring together people with neurodevelopmental conditions, carers, researchers, and charities to address gaps in research and ensure research really benefits those who think differently. Our first topic is indicators of mental health conditions in people with neurodevelopmental conditions who speak few or no words. At present, there’s very little evidence base for this, so treatment depends largely on how families and professionals understand individual people – as a result many are left without appropriate support, and at the same time many face harmful over-medication for distressed behaviour. See Embracing Complexity’s website for more information and details on how to join.

It’s time to #EmbraceComplexity in research on neurodevelopmental conditions and mental health! To join the research network or find out about the special interest research group, see Embracing Complexity’s website.

It’s time to #EmbraceComplexity in research on neurodevelopmental conditions and mental health! Join the research network or find out about the special interest research group.

Statement of interests

Suzi was not involved in the primary study reviewed in this blog but does know (and has completed research with) some of the authors. Suzi completed the research project on embracing complexity in research on neurodevelopmental conditions and mental health, with funding from Emerging Minds. Suzi is also a co-ordinator of the special interest research group Embracing Complexity in Neurodevelopmental Conditions and Mental Health.

Links

Primary paper

Cameron, L, Phillips, K, Melvin, A et al (2020) Psychological interventions for depression in children and young people with an intellectual disability and/or autism: systematic review (HTML abstract only) British Journal of Psychiatry, 2020, 1-10

Other references

Alexander R, Langdon P, O’Hara J et al (2021) Psychiatry and neurodevelopmental disorders: experts by experience clinical care and research (HTML full text) British Journal of Psychiatry, 2021 218(1) 1-3

American Psychiatric Association (2013) DSM-5 Autism Spectrum Disorder Fact Sheet (PDF) American Psychiatric Association Website, last accessed 2 Mar 2021

Embracing Complexity research (HTML) Embracing Complexity website, last accessed 12 May 2021

Embracing Complexity special interest research group: Applications now open (HTML) Embracing Complexity website, last accessed 12 May 2021

Embracing Complexity (2019) Towards new approaches for supporting people with neurodevelopmental conditions (HTML) Embracing Complexity website

Embracing Complexity (2019) Embracing complexity in diagnosis: Multi-diagnostic pathways for neurodevelopmental conditions (HTML) Embracing Complexity website

Emerging Minds special interest research group: Embracing complexity in neurodevelopmental conditions and mental health (HTML) Emerging Minds website, last accessed 2 Mar 2021

Find an NHS psychological therapies service IAPT (HTML) NHS website, last accessed 2 Mar 2021

Flynn S, Vereenooghe L, Hastings R P et al (2017) Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: A systematic review (PDF full text) Clinical Psychology Review 2017 57, 32-44

Gray K, Hastings, R, Melvin, G, et al (2020) Psychological interventions for depression in children and young people with an intellectual disability and/or autism: a systematic review (HTML full text) PROSPERO international prospective register of systematic reviews

Hallett, S & Kerr, C (2020) “You need support, validation, good coping skills. You need and deserve acceptance”: Autistic Adult Experiences of Counselling (PDF full text) Autistic Mental Health & Autistic Mutual Aid Society Edinburgh (AMASE)

Kumar A, Trescher W, & Byler D (2016) Tourette syndrome and comorbid neuropsychiatric conditions (HTML full text) Current Developmental Disorders Reports 2016 3(4) 217-221

Lai, M-C, Kassee C, Besney R et al (2019) Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis (PDF full text) The Lancet Psychiatry 2019 6(10) 819-829

Larson K, Russ S A, Kahn R S et al (2011) Patterns of comorbidity, functioning, and service use for US children with ADHD, 2007 (HTML full text) Pediatrics 2011 127(3) 462-270

Maïano C, Coutu S, Tracey D et al (2018) Prevalence of anxiety and depressive disorders among youth with intellectual disabilities: a systematic review and meta-analysis (HTML abstract) Journal of Affective Disorders 2018 236 230-242

NHS England (2019) Stopping the over‑medication of children and young people with a learning disability, autism or both (STOMP) and supporting treatment and appropriate medication in paediatrics (STAMP) (PDF). NHS website, last accessed 2 Mar 2021

NICE (2013) Autism spectrum disorder in under 19s: support and management (HTML) NICE website, last accessed 2 Mar 2021.

NICE (2019) Depression in children and young people: identification and management (HTML) NICE website, last accessed 2 Mar 2021

NICE (2016) Mental health problems in people with learning disabilities: prevention, assessment and management (HTML) NICE website, last accessed 2 Mar 2021.

Pauc R (2005) Comorbidity of dyslexia, dyspraxia, attention deficit disorder (ADD), attention deficit hyperactive disorder (ADHD), obsessive compulsive disorder (OCD) and Tourette’s syndrome in children: A prospective epidemiological study (HTML abstract) Clinical Chiropractic 2005 8(4) 189-198

Russel G, Mandy W, Elliott D et al (2019) Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis (HTML full text) Molecular Autism 2019 10(9)

Rydzewska E, Hughes-McCormack L A, Gillberg C et al (2018) Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population (PDT full text) Autism 2018 23(5) 1201-1209

Sapiets S. Embracing complexity in neurodevelopment research (HTML) Emerging Minds website, 3 Aug 2020

Types of talking therapies (HTML) NHS website, last accessed 2 March 2021