"Without official recognition, autistic people will never have the necessary support"

"To understand the cause of this increase, it is necessary to take into account several factors. On the one hand, the diagnostic criteria have been updated in the new international classifications and, as defined in the DSM-5, some disorders such as Asperger's or pervasive developmental disorder have become part of the autism spectrum disorder. This has obviously contributed to this expansion. But, on the other hand, there is also more social awareness ; the work that we do as entities has made it easier for families, educational and health services and the community in general to be better informed and able to detect the signs of autism. And finally, professionals also have more knowledge and training , and this makes it easier to make earlier assessments and initiate preventive processes to improve prognoses."

"Having a diagnosis does not guarantee that you will have a full life, if it is not accompanied by the resources and support you need. Today, in today's society, there are still many persistent barriers that are very complicated to eliminate. But the main problem is that we are not officially recognized as a group , and this has consequences in various areas. Currently, there is a portfolio of services that includes resources aimed at intellectual disability and mental health, but without taking into account the specificities of autism. And, therefore, they often do not offer resources or support to accompany autistic people and their families.

It also happens in the educational field . It is not a question of debating whether schools should be inclusive or not, because that is unquestionable. The problem is that education offers the resources and support necessary to guarantee quality education to all students, not just autistic people, but of course, the students who need more specialized support are the ones who are most affected.

Education does not have the resources and support necessary to guarantee quality education to all students, and those who need the most support are the most affected.

And we also have to consider whether the lives of people with the greatest need for support are truly dignified when they have to do the same thing every day, in the same way. These people should have alternatives and opportunities to live as full a life as possible, like other people. But to do so, they need supports that they often do not have.

Difficulties faced by autistic people in the workplace

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"The main right that is violated is that of being recognized as a collective. From here,
all the consequences that this has. To begin with, the right to receive adequate care is often violated. In this sense, early detection is essential to be able to provide good accompaniment and support that facilitate the child's development. If this diagnosis is postponed, very valuable time is being lost that will not be recovered, in addition to the anguish and suffering of the family. And in the case of care for adults, the services do not have the necessary adaptations to care for autistic people, who often stop accessing them and worsen their health.

The main right that is violated is that of being recognized as a collective. From here,
all the consequences that arise from it, in all areas of life.

Access to independent living is also a violated right. People with disabilities and autistic people have many difficulties accessing, for example, government-sponsored housing or accessible housing. In fact, they don't even consider it anymore. We also find that there are some degrees of autism with more autonomy, but with associated mental health comorbidities, and they cannot enter a degree of dependency to have the support they need, such as the figure of a personal assistant, for example.

We cannot leave families alone in this situation, who often do not report the violation of rights due to the economic and emotional toll it takes on them. And this, as an entity, makes you feel very powerless, because sometimes the pressure is not enough to achieve the necessary changes .

"One of the most valuable things we have as an entity is the social base: more than 800 associated families , in a space where they feel understood, where they share concerns and solutions learned from their own experience. This sense of belonging, of being part of a community , is very important for all of them."

The organization has spaces for emotional support activities (GAM) and training activities, where tools are provided to manage certain situations. We also have a specialized service to address topics such as sex-affectiveness, nutrition, positive parenting or mindfulness , and we offer educational support and leisure activities. In addition, we are now developing support services for adult life.

But what we really do is accompany and offer support to the community , to make society more accessible for autistic people and thus guarantee their participation. It is important to remember that most of the strategies we use to improve accessibility for autistic people are useful for everyone.

"Some people have discovered that they are autistic after their children were diagnosed, when they were already members, and this has given the organization a first-person view from the inside. For people with more autonomy, one of the main demands we have has to do with the workplace. Often, these people have very good training, but they do not pass the personal interview or, once inside the company, they have relationship difficulties and misunderstandings. At Aprenem Autisme we ensure and work so that the selection process focuses on the skills specific to the job, and not on the entire ideology or set of requirements that are often included in a job offer. It should be remembered that only one in ten autistic people has access to the world of work.

"As for people who need more support in autonomy and personal development, we must look for ways so that they can also participate in the community. We should move towards the figure of the personal assistant and personal self-management budgets , so that each person can plan the life they want to lead, taking into account their reality. And in the area of ​​housing, it goes without saying, if it is already difficult for young people in general to become independent, imagine if there is a condition of autism." 
 

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

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"There are socioeconomic, cultural and social aspects that affect how a family experiences a diagnosis of autism and, at the same time, have an impact on the child's development. Sometimes we think that in families everything revolves around autism, when in reality they are families similar to any other. If a family with an autistic or disabled child has the support and resources they need, they can move forward like any other family. The problem is that the system does not contemplate this support and, then, the situation becomes complicated.

As a society, it is easier for us to stick with kind or simplified stories than to face the barriers, support needs and inequalities that still persist.

This does not mean that often, when we talk about autism, we tend to highlight the most visible or easiest to explain profiles, with the desire to break stereotypes. But if this story becomes the only one, we run the risk of offering an incomplete image that is far from real diversity. For example, there are autistic people with high abilities, but they are not the majority, and, on the other hand, this is a very present representation in films and series. As a society, it is easier for us to stick with kind or simplified stories than to face the barriers, support needs and inequalities that still persist. For this reason, we need to review the perspective we are building on autism and expand it. And here, entities also have a role: to help make all realities visible, without reductions or clichés .

Gemma Vilanova Porqueres

Author and mother of a boy with autism spectrum disorder (ASD)

"There is still little understanding about what it means to live with a person with autism."

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«Yes, we organize two major campaigns a year: the Correblau and the Connect to Autism .

The Correblau was an initiative of a father and started with 300 families who walked around the Ciutadella Park twice, but it has grown and evolved a lot. Now it is an event that, in addition to raising awareness and raising funds to improve support for autistic students, is an opportunity to link people to our organization. More and more companies are joining this initiative. Our goal is to build real bonds with them and for them to decide to walk alongside us by supporting job insertion projects that generate opportunities and real social impact.

The second campaign, Connecta't a l'Autisme , is being held in April, coinciding with World Autism Awareness Day. It is a very broad initiative, with various activities open to the community to raise awareness, inform and also advocate. As part of this initiative, we have the campaign We learn every day , video capsules to explain and teach various realities of autism.

Beyond providing guidance on resources and services, associations provide an essential dimension: support. They are spaces where you can share experiences, find support and feel supported by other families, professionals and volunteers who walk alongside you. And this support also has a collective strength: when we organize, we join voices, advocate and contribute to driving change with greater force so that support and rights become a reality.