"Only 15% of people with autism live an independent life"

"Yes, firstly, there is a significant lack of research; we don't even know, to some extent, how autism presents in adults. We have diagnostic assessment tools, but they haven't been adapted to the latest advances, and there are no recognized intervention models for adulthood. I believe that adulthood is currently a crucial focus from every perspective. We need more research studies, the development of a minimum level of specialized care, and training for professionals. I think this represents a very significant challenge worldwide , one that will lead to changes even in the current conceptualization of mental health."

"The first is the training of mental health professionals. We have professionals who, due to the lack of a recognized specialty within child and adolescent mental health, have not had prior training in the typical and atypical development of autism in childhood and adolescence. Diagnosing autism at any adult age implies that the most obvious signs of autism symptoms occur in childhood. Therefore, gathering the person's entire life history for the diagnosis of all neurodevelopmental disorders is fundamental."

Another challenge is that the presentation of autism changes with age, and the symptoms are not as obvious as in childhood . In adults with autism, their difficulties are more visible in how they think, how they feel, how they integrate information, and how they adapt to their environment. However, we lack assessment tools for social cognition in adults with good cognitive abilities. There are standardized diagnostic tests that have proven effective, but perhaps we need to adapt them further for those with good cognitive abilities and also for those with moderate-to-severe intellectual disability, which are the two extremes where these tools fall short.

The vast majority of adults with autism want to connect with others, they want to have a life, they often have social initiation, but sometimes what they struggle with is reciprocity, the ability to understand and adapt to others.

On the other hand, another obstacle is this outdated concept of autism , which doesn't work for adults, especially those with good cognitive abilities. The vast majority of adults with autism want to connect with others, they want to have a life, they often have social skills, but sometimes what they struggle with is reciprocity, the ability to understand and adapt to others; they can even be uninhibited at times. And this uninhibited sociability with a lack of reciprocity is not associated with autism, and they can end up receiving incorrect diagnoses, such as personality disorders, hypomania, or bipolar disorder.

I've been diagnosed with autism spectrum disorder in adulthood… Now what?

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"Epidemiological studies identify three or four boys for every girl, while at the clinical level we detect nine or ten boys for every girl. Underdiagnosis exists, and for several reasons. First, many girls go undetected because autism presents more subtly in them : they are more socially active and have fewer repetitive behaviors, they imitate more, and they control their symptoms better from a very young age. Therefore, girls often go undiagnosed during childhood, and if they are, it is delayed. And here we already have a first difference: they do not have access to early diagnosis and treatment."

And in adulthood, the way mental health problems, for example, present themselves is also different. Just as men have more learning and behavioral problems, or perhaps more problems in the area of psychosis or obsessive-compulsive disorders, women are much more emotional and, therefore, have more emotional problems, anxiety, depression, disinhibited sociability, significant emotional dysregulation… In other words, an emotionality that is not associated with autism. And on the other hand, the repetitive behaviors of adult men are sometimes not so obvious in women either, because they tend to have more social interests, which also go more unnoticed. All of this makes misdiagnosis more frequent in women , who are sometimes only diagnosed with comorbidity and not autism, or autism is confused with other mental health problems.

Women with autism, the great forgotten ones

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"This is very relevant because women tend to have a worse prognosis than men . And this is another surprise we've encountered; we thought that the subtlety of the symptoms was related to a better prognosis, and we were wrong. Women with autism have poorer emotional adjustment, engage in more self-harm, commit suicide more frequently, and experience more traumatic episodes than men."

And, apart from that, although very little has been written about it, I think there's more stigmatization of women . One of the things that has most impacted me is seeing how intelligent women, with excellent educations, lead terrible lives. Perhaps their families or social circles haven't understood why they haven't succeeded, why they've been exposed to very abusive situations, and why it's been so difficult for them to hold down a job. I think they're misunderstood, and there comes a point when they're completely abandoned. There are university-educated women living in poverty, in utterly desperate situations. I think the stigmatization of women is another area we need to study much more deeply.

Women with autism have worse emotional adjustment, engage in more self-harm, commit suicide more frequently, and experience more traumatic episodes than men.

It's not just the autism, but the stress they experience . When you grow up with something that's happening to you but no one identifies it, when you receive different diagnoses but none of them fit, what happens is that you blame yourself and feel like you're letting everyone down, and this affects your self-esteem. This chronic stress of someone who hasn't received an explanation for what's happening to them and hasn't received adequate help has repercussions on how they grow and the lives they develop.

“We have two very different populations : people with autism and intellectual disabilities , who, along with their families, will need support throughout their lives. Then we have the group with cognitive abilities within the ‘normal’ range , some of whom will also need lifelong support, but of a different kind. The goal for these individuals is for them to live a life like anyone else, but to do so, they will need support for their daily functioning. One of the biggest challenges is access to employment , even for highly qualified people. That's why we need pre-employment training programs and employment programs tailored to the type of work they will be doing, their areas of expertise and knowledge, and the tasks best suited to them.”

But one of the biggest challenges is teaching them to live autonomously and independently , because autism greatly affects their capacity for autonomy: self-care, taking care of their lives… In other words, those small things that are imperceptible to us in daily life, but which for them are potential sources of stress. Therefore, at different stages of their lives they will need support, and it is essential to have community teams that help them first to learn and second to feel safe so that they can then do things independently.

If the world were adapted to people with autism, those of us who don't have autism would be the ones who would have problems, but we have adapted a world to our measure that is very difficult for them.

And then, develop housing programs with varying levels of supervision . Those with the greatest difficulties will need a residential setting, because they require comprehensive adaptations. But adults who are able to work, intelligent, and sometimes, due to their own social limitations, need apartments with a certain level of supervision where they can also socialize, where there are professionals who ensure that in times of stress they have that essential bond of trust. Maintaining contact via email or WhatsApp with a professional can be vital to prevent them from developing depression, quitting work, and entering a very difficult period in their lives.

We also haven't resolved the socialization process . Associations do great work, but we need much more continuous socialization programs throughout life. We must foster social awareness to integrate these individuals, who are very interesting despite being different from us. I always say that if the world were adapted to people with autism, those of us without autism would be the ones with problems, but we are still the majority, and therefore we have adapted a world to our needs, which is very difficult for them.

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"That's where the difficulty lies. We need to see how we develop feasible resources. One of the issues we haven't resolved is the challenges faced by people who experience difficulties throughout their lives. Intellectual disability is one example, but perhaps we're talking about a problem we've been working on for many years and that has received more resources, for which more aspects have been addressed than for autism, for which there are no specific resources. But the solutions for intellectual disability or mental health, which are often the ones offered for autism, are not applicable. Currently, all the services offered for autism are very general , and we need to see what resources are available and how we can develop them in a way that is feasible for these individuals who will need support throughout their lives."

Solutions for intellectual disability or mental health, which are often the ones offered for autism, are not applicable.

There is also another crucial social change: we lack extended families . Many adults with autism don't have siblings, and for these aging parents, without extended families, it's a terrible anguish to think about what will happen to their children. Therefore, we must develop different social models , where public awareness helps people who have little social support within their families or communities. This still needs to be developed. We need a new social perspective in a very individualistic and isolated society.

"It's a huge issue. One of the key advances in recent years has been identifying that autism in people with normal cognitive abilities is linked to a very significant risk factor for developing mental health problems. More than 90% of people with autism will develop mental health problems . Autism increases the incidence of all kinds of mental health problems. We are also seeing a link between autism and the chronicity of certain subgroups of mental health disorders . For example, in eating disorders, we have seen that the most chronic group of anorexia nervosa, those that do not respond to treatment, is associated with women who have an undiagnosed autism diagnosis. And this also occurs with borderline personality disorder, which has sometimes been confused with undiagnosed autism."

Another aspect we're seeing is substance use among people with autism and an increase in psychotic episodes, primarily caused by this substance use. We're also seeing anxiety. Sometimes, people with autism are diagnosed with schizophrenia or psychosis after experiencing a highly stressful emotional event, and they may not respond to treatment because they lack a more specific diagnosis of autism and any comorbid conditions. Without a prior diagnosis, the core of their suffering and challenges remains unknown, preventing them from receiving appropriate support.

Autism in people with normal cognitive abilities is linked to a very important risk factor for the development of mental health problems.

The reality is that there is still a great deal of ignorance surrounding autism, and very little research on all the comorbidities associated with it. We know that, for example, suicide and self-harm are more prevalent in this population, but we need to know much more about the causes and how to prevent them, because we know they are not the same as those in people without autism.

On the other hand, we have the limitation of assessment tools for mental health comorbidities, which are not adapted to the autistic population and do not work for them. Therefore, there is a huge need to develop assessment tools that are much more sensitive to people with autism, as well as specific programs for the treatment of autism-related comorbidity.

"I think this is still a black box. It's one of the things I wonder about a lot. Now, in my unit, half the cases we handle are adults, and they still come to us with their families or siblings after their parents have passed away. The question is, what happens to those who don't have siblings? We don't know much about the aging process in autism . We know that autism symptoms improve with age, but we don't know the impact of aging on cognitive abilities and autism symptoms. There are studies that indicate autism may be a protective factor against memory decline, for example. But we still need more studies, with a larger number of cases, to truly see the impact and the needs of these individuals as they face old age. I think this is a major concern. When you ask parents what worries them, even when their children are young, one of their biggest concerns is the future: what will happen to my child when I'm gone? It's something we haven't resolved at all."

"I've been working in the field of autism for 36 years, so I lived through the era when it was treated as an intellectual disability and there were no specific treatments for people with autism. Everything has changed a lot since then. One of the key milestones was realizing that early identification and treatment had a significant impact on the course of the condition ; early detection and the development of specific treatment programs for autism, such as ABA at the time, marked a turning point and demonstrated that change was possible."

Another fundamental change is that autism was long called childhood autism, as if it disappeared at age 18. And all the follow-up studies have been very recent. The discovery of autism in people with normal cognitive abilities , the follow-up studies of this population, and what we've been seeing in recent years—their increased risk of developing mental health problems—is another phase that is decisively changing the perspective on autism.

But also, undeniably, genetic and technological advances . Currently, in 40% of cases of autism associated with intellectual disability, we can identify the genetic causes that have the greatest influence. This is very important for families, but also for us, to understand what kind of medical and mental health problems they may develop, to promote prevention programs for this issue, and to further investigate the impact of these genetic causes and potential treatments. These three milestones have been very significant in the history of autism.

Dr. David G. Amaral

Director of Research

MIND Institute Research. UC Davis Medical Center

"I believe that within a decade we will have markers to detect ASD in six-month-old babies."

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“We hope so, but the reality is that we still need many more follow-up studies. We know the impact of early autism identification and the short-term improvement, but we don't know the long-term impact of treatments. We know that two-thirds of people with autism have normal intellectual ability, but in follow-up studies, only 10% or 15% live independently . Many of these adults haven't had access to treatments as they do now. Creating intensive treatment programs within public services to meet this growing demand for diagnosis is proving very difficult.” Although we would need to see the true impact, our feeling is that we are enabling many of the people who have been identified and treated early to live lives really like any other: teenagers who study, who do university courses, who go to university, who have friends, who have partners… But we need to confirm this with longitudinal follow-up studies and we must see what factors allow them to have a life in accordance with their functionality, their intellectual capacity and their age.”