When I'm 64
In short
This text is about the move of young autistic people from children's health services to adult services. Autism does not end at 18, but support drops sharply after that age. The text explains what is missing in Portugal, with particular attention to autistic people with intellectual disability. It proposes transition clinics and more teamwork between paediatrics, psychiatry and psychology.
"Give me your answer, fill in a form,
Mine forevermore.
Will you still need me, will you still feed me,
When I'm sixty-four?"
When I'm sixty-four (1967), the Beatles
Perhaps we do not need to wait until 64, as the Beatles sang, to think about what may happen when we talk about autistic people. Forgive my bluntness, but given the current state of affairs and the clinical and scientific information we have, it simply makes no sense that there is no other response in terms of healthcare.
This Friday I will be at Faro Hospital, with a paediatrician and a psychiatrist, talking about the transition of autistic people from child and adolescent mental health services to adult mental health services. To many, this may seem like a formal, administrative, bureaucratic matter. It is not.
Transition is not moving a file from one service to another. It is the moment when a young autistic person, often followed for years by a team that knows them well, comes to depend on services that frequently do not know them, are not prepared to receive them and, in some cases, do not really know what to do with them. And it happens at a stage of life that is already full of change: the end of compulsory schooling, new demands for autonomy, leaving an education system that, for all its flaws, still worked as a safety net.
An imperative, not a procedure
Thinking about the transition of autistic people within health services is an imperative and a duty we all owe to autistic people and their families. Who has never heard parents of autistic children ask what will happen when they are no longer here? This question, often spoken quietly at the end of an appointment, is perhaps the most honest way of describing the problem.
Autism does not end at 18. Autism Spectrum Disorder (ASD) accompanies the person throughout their whole life, and needs change, but they do not disappear. In many cases they increase: adulthood brings social, work and autonomy demands that childhood did not, and this is precisely when support decreases.
We can keep lamenting the sad reality of autistic people and their families. Or we can demand a different response, thought through and adapted to autistic people. I prefer the second option.
Diagnosis: in childhood and in adulthood
In the paediatric age group, ASD diagnosis has become more frequent and earlier, and that is an achievement. But some children still go unnoticed: girls, children who do well at school, children whose difficulties are expressed mainly as anxiety, school refusal or "difficult" behaviour. Many of these children reach adulthood without a diagnosis, or with diagnoses that explain only part of the picture.
In adulthood, the challenges are different. Assessment tools were designed mainly for children, developmental history is not always available, and years of camouflaging (masking) make the signs less visible. Add to this the co-occurring conditions, such as anxiety, depression, ADHD or eating disorders, which are often the reason for the first appointment and end up taking up all the clinical space.
ASD, ID and personality disorders
Three diagnostic confusions deserve special attention:
ASD and Intellectual Developmental Disorder (ID). They can co-occur, but they are not the same thing. When they co-occur, there is a risk that everything is attributed to ID and that the sensory, communication and social needs specific to ASD go unrecognised. The reverse also happens: autistic people with communication difficulties assessed as having lower intellectual functioning than they actually have.
ASD and personality disorders. In adults, especially women, it is not unusual to see a diagnosis of borderline, schizoid, schizotypal or avoidant personality disorder when what is really at stake is unidentified ASD, sometimes with associated trauma. Rigidity, relationship difficulties or emotional dysregulation can be read very differently depending on the lens of the assessor.
Diagnoses that pile up. Some adults arrive with four or five diagnoses over the course of their lives, none of which explains the whole.
Here it is worth hearing different perspectives. Some clinicians argue that ASD is now overdiagnosed in adults and that we risk turning ordinary psychological distress into a label. Others stress that historical underdiagnosis, especially in women and in people without ID, is still the main problem. Both concerns are legitimate, and the answer to both is the same: assessments carried out by professionals with specific training in adult ASD, with time and with a differential-diagnosis perspective.
What support exists today, and what is missing
In childhood, despite waiting lists and regional inequalities, there is a recognisable pathway: developmental paediatrics, child psychiatry, psychology, speech and language therapy, occupational therapy, and coordination with schools and inclusive education services. In adulthood, that pathway falls apart. The person moves to general adult psychiatry or to their family doctor, in services where ASD is rarely an area of training or priority.
In the private sector there is more on offer for adults, but quality is uneven, it is concentrated in the large urban centres and it is unaffordable for many families. For adults with ID or with higher support needs, social services, such as Activity and Capacity-Building Centres for Inclusion or residential homes, have places far below demand.
Identified needs
Transition clinics, with a period of shared follow-up between the child and adult teams, instead of a discharge followed by a new waiting list.
Adult mental health professionals with specific training in ASD, including psychiatrists, psychologists and family doctors.
An individual transition plan, started early (around ages 14 to 16), covering health, education, employment, autonomy and legal status.
Accessible diagnostic assessment in the Portuguese National Health Service (SNS) for adults who have never been diagnosed.
Evidence-based interventions adapted to autistic adults, and not just pharmacological treatment of co-occurring conditions.
Support for families, including information on the supported-adult legal regime (maior acompanhado) and on long-term planning.
What I would like to see in the future
A reference network for adult ASD, coordinated at regional level, with teams that act as consultants to general mental health services. There is no need to create a parallel system: what is needed is for the existing system to know how to receive autistic people.
There is a lot of talk about autism. Is the world really that inclusive?
Autism has never been talked about so much. There are campaigns, world days, TV series and public figures who openly say they are autistic. That has merit: it reduces stigma and helps many adults recognise themselves. But visibility does not automatically translate into inclusion.
In practice, autistic adults still face:
Employment: recruitment processes based on interviews that assess social skills more than the skills needed for the job, and workplaces poorly adapted at a sensory and organisational level.
Higher education and training: support that depends heavily on the goodwill of each lecturer or institution.
Physical health: appointments, emergency departments and tests designed without considering sensory and communication differences.
Autonomy and housing: few intermediate solutions between living with one's parents and living alone.
Relationships and mental health: loneliness, exhaustion (autistic burnout), anxiety and an increased risk of suicidal ideation, especially in adults without ID.
Here too there are different perspectives. The neurodiversity movement argues that the focus should be on changing contexts, not the person. Many families of people with higher support needs fear that this discourse leaves out those who need intensive, lifelong care. A serious health policy has to respond to both realities.
The future and inclusion: ASD with ID
When autism is discussed in the public sphere, the conversation is mostly about autistic people without ID, with fluent language and the ability to self-advocate. Autistic people with ID, and their families, are often left out of the conversation, and they are precisely the ones who depend most on organised public services.
For these people, the transition to adulthood is often a passage from a network of support to almost none. Behaviours that arise in situations of distress, unidentified physical pain or sensory overload are frequently treated only with medication, without a functional assessment of what drives them. And the parents' question, "what will happen when I'm no longer here?", carries its full weight here.
Including is not treating all autistic people the same way. It is recognising that the spectrum is broad and that a serious policy must serve both the adult who needs an adjustment at work and the adult who needs continuous support in every area of life.
What paediatrics, psychiatry and psychology can do today
Paediatrics can start thinking about adulthood long before 18. It can introduce the topic of transition in adolescence, prepare a complete clinical summary for whoever will receive the young person, involve the young person in decisions about their own health, and not discharge without a real handover.
Psychiatry, both adult and child and adolescent, can create joint transition clinics, invest in training on adult ASD and look beyond co-occurring conditions. Treating anxiety or depression without considering autistic functioning often leads to partial responses or avoidable adverse effects.
Psychology can ensure rigorous diagnostic assessments in adults, offer psychoeducation to the person and family, and adapt therapeutic interventions (such as CBT, ACT or DBT) to the characteristics of autistic people, instead of expecting them to adapt to therapy.
None of these fields solves the problem alone. Transition only works if it is teamwork, with the autistic person and their family at the centre of decisions.
Don't wait until 64
Today's autistic child will be tomorrow's autistic adult and, a few decades from now, a 64-year-old autistic adult. Every decision we make now in paediatrics, psychiatry and psychology is also a decision about that future.
I leave a few questions to take to Friday, and beyond:
How is the transition of a young autistic person between services carried out in Portugal today, and who is responsible for it?
What diagnostic challenges do we face in childhood and adulthood, and how do we distinguish ASD, ID and personality disorders?
What support exists in the SNS and in the private sector, and where are the biggest gaps?
What needs have already been identified, and what would we like to achieve in the coming years?
At a time when autism is talked about so much, is the world really more inclusive for autistic adults?
How do we ensure that autistic people with ID are not left out of the conversation about inclusion?
What can paediatrics do today for these children's future as adults? And psychiatry? And psychology?
We don't need to wait until 64 to have these answers. We need to start building them now.
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