Autism covers people with very different combinations of communication ability, intellectual ability, adaptive functioning, health conditions and day-to-day support needs. Some autistic advocates choose to speak across the full spectrum, including for autistic people with intellectual disability or very high support needs. I understand the inclusive intention. My concern is that an advocate’s own lived experience may not provide enough information to make confident claims about people whose circumstances are materially different from their own.
This caution applies even when people have similar speech or support needs. Under my multiple-autisms working hypothesis, they may start from materially different inner experiences; sharing a label does not make one person’s account a reliable description of another.
Why precision in representation matters
When public messaging treats all autistic people as though they have broadly similar capacities and needs, it can create misunderstandings in more than one direction. People with intellectual disability or substantial support needs may have their practical care, communication and safety needs underestimated. At the same time, autistic people who can work independently or take on professional responsibilities may encounter assumptions that underestimate their competence. I have encountered versions of these tensions in autism advocacy, and I believe more precise language would help both groups.
The diagnostic debate itself shows how difficult this is. The DSM-5 consolidated Asperger syndrome and other previous autism diagnoses into autism spectrum disorder. The Transmitter has reported on the continuing debate about whether one broad diagnosis communicates the range of autistic people’s needs clearly enough. Researchers and stakeholders have also debated the usefulness and definition of terms such as “profound autism”. I do not think a label resolves every issue, but the debate reinforces a basic point: people under the same diagnostic umbrella can require very different forms and levels of support.
Different roles bring different knowledge
I do not think any one group should automatically claim exclusive authority over another person’s life. Autistic people bring lived experience. A person with intellectual disability or high support needs should be supported to express preferences and choices through whatever reliable communication methods are available to them. Family caregivers can bring detailed knowledge of day-to-day care, safety, routines and long-term support. Clinicians and support professionals can bring training and evidence from practice. Each perspective has limits.
For that reason, I urge autistic advocates to be explicit about the boundary between speaking from personal experience and speaking on behalf of people whose needs differ substantially from their own. Someone who does not have intellectual disability, does not require comparable levels of daily support, and does not have relevant professional or caregiving experience should avoid presenting personal preferences as universal solutions. I apply that principle to myself as well.
Caregivers also have legitimate interests in discussions about services because they may contribute substantial time, labour, money and responsibility for another person’s daily support. That does not give a caregiver unlimited authority, and it does not erase the disabled person’s rights or preferences. It does mean that advocacy which treats caregivers only as obstacles miss important practical realities.
Rights and practical support should not be treated as opposites
Autonomy and human rights are not abstract extras that can simply be set aside when a person has intellectual disability. They remain important. But rights-based language also needs to be connected to practical questions: communication, personal care, safety, medical needs, respite, supported decision-making, sustainable caregiving and the resources required for community living.
In my view, advocacy becomes less useful when it assumes that the priorities of a verbally fluent, independently living autistic adult will automatically match those of a person who needs continuous assistance with daily living. The same is true in reverse. Neither group should be used as a stand-in for the other.
A more careful way to discuss intervention
Applied Behaviour Analysis (ABA) is a particularly contentious example. I remain concerned about behavioural approaches when they prioritise compliance or normalisation over an autistic person’s own goals, communication and wellbeing. At the same time, I do not think those concerns justify treating every behavioural intervention as inappropriate for every autistic person. The label “ABA” can cover practices that differ considerably in goals and implementation, and autistic people and families report very different experiences.
Where a person has severe communication difficulties, intellectual disability, self-injury, aggression or other behaviour that creates an immediate safety concern, families and professionals may consider behavioural support among a wider set of options. The important questions, in my view, are whether a specific intervention is individualised, proportionate to the problem being addressed, monitored for harm, responsive to the person’s communication, and respectful of dignity. An intervention should be judged by what is actually done and by its effects on the individual, not only by the label attached to it.
The cost of turning advocacy into a permanent conflict
Advocacy across very different support needs can also create conflict with caregivers, clinicians, service providers and non-profit organisations whose priorities may differ. Institutions may have more resources or formal access to decision-makers than individual advocates. In my experience, prolonged public conflict can consume time, strain working relationships and shift attention away from practical improvements.
I do not think disagreement should be avoided simply because another party is more influential. Nor do I think advocates should stay silent about practices they reasonably believe are harmful. My narrower point is that public criticism is strongest when it has a clear purpose, a factual basis and a realistic connection to improving people’s lives. It is usually better to address a specific policy, practice or argument than to assume bad faith on the part of an entire group.
What I would ask of other autistic advocates
When I was doing autism work, I aim to advocate only from the part of the autistic experience I knew directly. I did not consider myself qualified to prescribe how people with substantially different cognitive, communication or care needs should live, particularly where I lacked professional training or direct experience with those needs.
I would encourage other advocates to make the same distinction. Speak strongly about what you know. Challenge policies and practices where there is evidence to do so. But identify when a statement is personal experience, when it is an interpretation, and when it is a claim that requires broader evidence. Where another person’s needs are very different, make room for that person’s own communication, for caregivers who know the daily realities, and for relevant professional expertise.
For autistic people whose strengths are in employment, technology, entrepreneurship, education, peer support or other areas, I also think there is value in concentrating advocacy where our experience can produce practical results. That is not a retreat from disability rights. It is a case for clearer scope, better evidence and more honest representation.
Autism is already a broad and sometimes contentious field. We do not need artificial unity that erases major differences, and we do not need counterproductive permanent hostility between autistic people, families and professionals either. My preferred approach is narrower: be precise about whose experience we are describing, avoid claiming to speak for people we do not understand well, and build cooperation where interests genuinely overlap.