What Outcomes Should I Track for Self-Injury if Trying Any New Treatment?

Self-injury, or non-suicidal self-injury (NSSI), refers to deliberate harm inflicted on one's own body without the intention of suicide. Common presentations include skin picking, head banging, and cutting. Last month, I was working with a client who made a mistake that cost them thousands.. When considering any new treatment to manage self-injurious behavior, especially in autistic individuals or those with co-occurring conditions, it is crucial to monitor specific outcomes to understand the treatment's effectiveness and safety.

This blog post unpacks the essential outcomes to https://londoninsider.co.uk/medical-cannabis-and-autism-what-london-families-should-know/ track, clarifies distinctions between autism and co-occurring conditions, and highlights evidence-based recommendations from trusted sources, including the National Institute for Health and Care Excellence (NICE) and the General Medical Council (GMC). We also explore the limitations of current evidence, the risk of placebo effects, and narrow epilepsy indications such as Dravet and Lennox-Gastaut syndromes, to help you navigate treatment decisions with confidence.

Understanding Self-Injury and Its Context

Before tracking any outcomes, it is vital to specify the symptom being treated. In this context, self-injury refers specifically to deliberate behaviors causing physical harm without suicidal intent. It is often a form of communication or coping strategy for managing distress, sensory needs, or emotional overwhelm.

Autism vs Co-occurring Conditions

Many autistic individuals engage in self-injurious behaviors, but these behaviors can also be driven or compounded by co-occurring conditions such as anxiety disorders, epilepsy, or mood disorders. NICE guidance emphasizes the importance of differentiating autism-related behaviors from those primarily related to another diagnosis.

• Autism: Self-injury may be related to sensory processing differences, difficulties with emotion regulation, or environmental triggers.
• Co-occurring conditions: For example, self-injury in epilepsy (especially Dravet or Lennox-Gastaut syndromes) might be influenced by seizure activity or medication side effects.

Double-checking which condition primarily drives the self-injury is critical, as it guides the choice of treatment and expectations for improvement.

What Does NICE Say About Treatments for Self-Injury?

The NICE guidance library, including NICE Guideline NG11 on challenging behavior and learning disabilities and CG170 on epilepsy in children and young people, provides the most authoritative UK-based advice on managing self-injury and associated conditions.

Here is a summary of what NICE currently advises:

• Psychological and behavioral interventions are recommended as the first-line treatment for self-injurious behaviors, particularly positive behavioral support (PBS) tailored to individual needs.
• Pharmacological interventions are generally not recommended solely to treat self-injury; they may be considered for co-occurring psychiatric or neurological conditions after thorough assessment.
• No medication is currently approved specifically for treating self-injury in autism or learning disabilities.
• Epilepsy treatments: For self-injury linked to seizure disorders such as Dravet or Lennox-Gastaut syndromes, certain anti-epileptic drugs (AEDs) may indirectly reduce self-injury by controlling seizures.

The GMC's prescribing guidance further stresses that any off-label medication use requires clear evidence, informed consent, and regular monitoring of risks and benefits.

Key Outcomes to Track When Trying a New Treatment

When implementing a new therapy or medication to manage self-injury, consistent, objective, and meaningful tracking of outcomes is essential. This helps distinguish real improvements from placebo effects or natural fluctuations.

1. Incident Frequency

The number of self-injury episodes over a specified period (daily, weekly) is a foundational outcome to monitor.

• Record the date and time of each incident.
• Use standardized logs or apps to capture data consistently.
• Establish a baseline period before starting treatment to detect meaningful changes.

2. Severity Notes

Severity refers to the intensity and impact of each self-injury episode.

• Describe the type of injury (e.g., superficial scratch, deep cut, head banging).
• Note any medical interventions needed (e.g., bandaging, emergency care).
• Consider using severity scales such as the Self-Injury Severity Questionnaire (SISQ) if appropriate.

3. Risk of Harm

Documenting the potential or realized risk of harm is critical for safety monitoring.

• Note whether injuries risk infection, scarring, or permanent damage.
• Include any signs of increased distress or new behaviors that might indicate worsening risk.
• Report any adverse effects from treatments that may increase harm (e.g., sedation leading to falls).

4. Contextual Factors

Besides direct metrics, tracking environmental and emotional context helps clarify causation.

• Record circumstances before incidents (e.g., sensory overload, changes in routine).
• Note any known triggers or protective factors.
• Include mood or anxiety ratings if feasible.

5. Co-occurring Symptoms

Since self-injury often co-occurs with other symptoms, monitoring related behaviors offers a fuller picture.

• Track seizure frequency and control, especially for epilepsy-associated self-injury.
• Monitor mood symptoms, sleep quality, and medication side effects.

Challenges and Limitations in Evidence

It is important to recognize that while measuring outcomes is vital, current evidence for many treatments targeting self-injury is limited.

Placebo Effects

Reports of “seems calmer” or “less anxious” without structured measurement are common but unreliable. Placebo effects can be significant, especially when expectations are high.

• Use validated rating scales wherever possible.
• Engage multiple observers (family, clinicians) to increase objectivity.

Narrow Epilepsy Indications

In conditions like Dravet and Lennox-Gastaut syndromes, anti-epileptic drugs may indirectly reduce self-injury by controlling seizures, but these are not treatments for self-injury per se.

Many such drugs have specific licensing for these syndromes but limited evidence for broader autism-related self-injury.

What NICE Does Not Recommend

The NICE guidance explicitly avoids recommending cannabis or other unlicensed products for self-injury, highlighting a lack of rigorous evidence and regulatory approval.

Medical professionals and families should exercise caution with any claims of “treating autism” or self-injury with unproven substances, aligning with GMC standards for safe prescribing.

Summary Checklist for Tracking Outcomes in Self-Injury Treatment

Outcome Recommended Recording Purpose Incident Frequency Number and timing of episodes Baseline comparison and trend detection Severity Notes Type and intensity of injury Assess impact and need for medical intervention Risk of Harm Potential damage and safety concerns Ensure participant safety and address emerging risks Contextual Factors Environmental and emotional states around incidents Understanding triggers and protective factors Co-occurring Symptoms Seizure logs, mood and sleep monitoring Comprehensive symptom management

Final Considerations

Tracking outcomes when trying any new treatment for self-injury should be systematic and grounded in established guidance. The NICE guidance library is the starting point for understanding evidence-based recommendations, supported by ethical prescribing standards from the GMC.

Because treatments differ in applicability—whether psychological interventions for autism-linked self-injury or anti-epileptic drugs for narrow epilepsy syndromes—the choice and focus of outcome measures must align with the underlying condition and treatment goals.

Always remember to:

1. Define the symptom precisely before choosing treatments.
2. Set a clear baseline and consistently track incident frequency, severity, and risk of harm.
3. Consider contextual and co-occurring factors.
4. Interpret changes cautiously, mindful of placebo effects and natural variability.
5. Consult NICE guidance and seek input from qualified healthcare professionals.

By adhering to these principles, families and clinicians can better evaluate treatment effectiveness and make informed decisions that prioritize safety and meaningful improvement.

You know what's funny? if you have questions or need help navigating nice guidance for specific treatments around self-injury or related conditions, feel free to reach out or visit the official nice guidance library.