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Writer's pictureBy Kathleen Schubert (Actually Autistic, author of U Don’t Seem Autistic)

Moving Towards Empathy and Inclusion: Rethinking Autism Care


A diverse group of people.

In recent years, discussions surrounding autism care have gained momentum, shining a spotlight on the challenges faced by individuals on the autism spectrum. A recent article in The Independent UK has once again brought this issue to the forefront, emphasising the need for a paradigm shift in how we approach the care of autistic individuals.


The Independent's article highlights the long-standing practice of institutionalising autistic individuals and subjecting them to unnecessary antipsychotic medications. In this blog, we will delve deeper into these concerns and explore why it is high time we abandon these outdated approaches. We will also present alternative care solutions prioritising empathy, understanding, and inclusion for autistic individuals.


The Problem with Institutionalisation

For decades, the institutionalisation of autistic individuals has been a common practice. These institutions, often resembling sterile, impersonal environments, are designed to accommodate a large number of people with various disabilities, including autism. However, this one-size-fits-all approach to care has significant drawbacks for those on the autism spectrum.


  1. Aggravation of Symptoms: Institutional settings can exacerbate the symptoms of autism. Living with strangers in close quarters, being subjected to rigid routines, and having little control over one's environment can increase stress and anxiety, leading to more pronounced behavioural challenges.

  2. Dietary Restrictions: Institutionalised settings often impose uniform dietary plans, which can be problematic for autistic individuals with sensory sensitivities or specific dietary requirements. This lack of choice can lead to digestive disturbances, affecting their overall well-being.

  3. Sensory Overload: Institutions are typically characterised by bright fluorescent lighting, constant noise, and a lack of consideration for sensory sensitivities. For autistic individuals, these environments can be overwhelming, intensifying sensory issues and causing distress.

  4. Loss of Autonomy: Institutionalisation often means a loss of personal autonomy. Autistic individuals may have little control over their daily routines, activities, or personal space, further increasing their anxiety and discomfort.

The Overuse of Anti-Psychotic Medications

In addition to institutionalisation, another concerning issue raised in The Independent's article is the overuse of antipsychotic medications in the treatment of autistic individuals. These medications are sometimes prescribed to manage challenging behaviours associated with autism, but they come with a host of potential side effects and risks.


  1. Lack of Efficacy: Research suggests that anti-psychotic medications may not be effective in treating core autism symptoms. They are often used as a means of managing behavioural issues, but their effectiveness in this regard is questionable, and their long-term impact on individuals is largely unknown.

  2. Side Effects: Anti-psychotic medications can have a range of side effects, including weight gain, metabolic changes, and cognitive impairments. Administering these drugs without clear evidence of their necessity can cause more harm than good.

  3. Ethical Concerns: Prescribing anti-psychotic medications to control behaviour raises ethical questions about the medicalisation of autism. It's essential to differentiate between behaviours related to autism and behaviours that may be a response to the environment or communication challenges.


Alternative Care Approaches

It's clear that a radical shift in the care and support of autistic individuals is needed. Rather than perpetuating institutionalisation and overreliance on medications, we should focus on more compassionate and individualised approaches. Here are some alternative care solutions:


  1. Community-Based Living: Transitioning from institutional settings to smaller, community-based living arrangements can provide a more supportive and less overwhelming environment for autistic individuals. These settings allow for greater personalisation of care and an increased sense of autonomy.

  2. Person-Centred Planning: Developing person-centred plans for each individual, considering their unique strengths, needs, and preferences, can guide the provision of tailored support and services.

  3. Sensory-Friendly Environments: Creating sensory-friendly living spaces and workplaces that consider the sensory sensitivities of autistic individuals can significantly improve their quality of life.

  4. Behavioural and Communication Support: Rather than resorting to medications to manage challenging behaviours, investing in evidence-based behavioural and communication interventions can help individuals with autism better express themselves and cope with stress.

  5. Education and Training: Caregivers, educators, and healthcare professionals should receive training in understanding and supporting autistic individuals. Promoting awareness and empathy is crucial in providing effective care.

  6. Advocacy and Inclusion: Encouraging the active involvement of autistic individuals and their families in decision-making processes related to their care and promoting their inclusion in society can empower them to lead fulfilling lives.


The Independent's article highlights the urgent need to rethink how we approach the care of autistic individuals. Institutionalisation and the overuse of antipsychotic medications are outdated and often harmful practices that do a disservice to the autistic community.


It is time for a more empathetic, inclusive, and person-centred approach to autism care. By transitioning to community-based living, providing tailored support, and prioritising sensory-friendly environments, we can help autistic individuals thrive and lead fulfilling lives. Furthermore, promoting awareness and advocating for the rights and inclusion of autistic individuals in all aspects of society is essential to create a world that embraces neurodiversity and supports every individual, regardless of their unique challenges and strengths.


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