"We are experiencing a 'boom' in cases of adopted teenagers who were never diagnosed with FAS."

" AFASAF is an association of families affected by Fetal Alcohol Spectrum Disorder (FASD). And I say 'affected' because it's a disorder that affects not only our children, but also everyone close to them. What we try to do is support each other, help one another, and learn from the experience of families who have been dealing with this situation for longer. Ultimately, the goal is to improve our children's quality of life , and this means ensuring they have as normal a life as possible, that they can get an education, work, and have a future."

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Being part of the association allows these boys and girls to socialize with others and realize that they are not alone, that they are not the only ones who have this problem.

It is important to foster a sense of belonging within the community so that they do not become isolated and can feel integrated. They are aware that they are different from other people without a disorder, but they can also be very different from each other because the levels of impact of FASD vary greatly. In this sense, each person with FASD is unique, and this also makes social relationships more challenging, but in the association they can find friendships and feel part of this community.

We make available to families all the knowledge of those of us who have been here for many years, and specific services that can advise them, such as psychotherapists or lawyers, as well as activities in which we address specific everyday issues."

"Our goal is to improve the quality of life for our children and their families, and to obtain official and social recognition of the disorder, just as with other chronic illnesses. Fetal alcohol spectrum disorders are incurable because the brain damage is already done, and therefore it is chronic. We continue to face many challenges, for example, in the recognition and assessment of the degree of disability for the affected individual because there is no common pattern in the disorder; each person is unique... And this often results in the incorrect degree of disability being granted."

The association works on different lines to achieve this goal, which also include raising awareness and training families, educators and professionals in the justice field; promoting the need for early detection and correct diagnosis; and seeking or creating solutions for the adult life of the affected people, which is the great concern of the families."

"Families usually come to the association when they receive the diagnosis, but the problem is that FASD isn't always diagnosed at an early age. In my case, for example, we immediately realized something was wrong because it was very obvious FASD. But it doesn't always happen that way; in many cases, it can go unnoticed until adolescence , and this complicates everything because there hasn't been an opportunity to work with therapies during childhood."

We are currently seeing many families with children and teenagers adopted from Eastern European countries who have never been diagnosed. These cases often become more serious because of behavioral problems, impulse control issues, and social isolation. These children realize they are different, they don't fit in, and they haven't received specific interventions to address these issues. This often happens because the symptoms are subtle or due to misdiagnosis , which is very unsettling for families. They only contact us when they begin to suspect it might be Fetal Alcohol Spectrum Disorder (FASD), because there is a great deal of ignorance about this disorder at all levels.

There are really families who are having a very hard time because these are children who, perhaps intellectually, are less affected and that's why it has gone unnoticed, but they reach adolescence and serious behavioral problems appear that are very difficult to manage.

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It's also important to mention that this isn't a problem exclusive to children adopted internationally. There are increasingly more cases of domestic adoptions , due to alcohol consumption by women with unplanned pregnancies, or simply because there isn't enough awareness that there is no safe level of alcohol consumption during pregnancy. Consumption should be zero, not a single drop of alcohol . The difference is that, in these domestic cases, most adoptive parents already know the child has this condition, and their conscious approach to dealing with it is different.

"Well, the first message we give is not to despair, which is very common. We try above all to understand their needs and guide them, with information and with the resources we have so that they can start taking steps that will help them."

"An early diagnosis is essential to determine what therapeutic resources can be provided. I am absolutely certain that my son, for example, would not be who he is today if we hadn't worked so much with him from a very young age."

Of course, it's a disorder that doesn't have a specific treatment. What can be done are therapeutic interventions to help them manage characteristic aspects of these individuals, such as impulse control, decision-making, social skills, routines and structures, etc. And these should be implemented as soon as possible. That's why in cases where the disorder is only recognized when they are already teenagers, they have more serious problems related to academic performance or risky behaviors that can lead to legal issues, etc. It's also important to understand that this capacity to offer therapeutic interventions depends largely on what the family can commit to. The burden falls on the families.

"Perhaps the area where we've made the most progress is in raising awareness of this disorder, sensitizing people, and promoting knowledge in the most critical areas of our children's lives. But we must continue working because there is still a lot of misinformation in healthcare, schools, and the legal system. That's why we go to schools, high schools, and so on, because when you explain clearly what it's like to have a boy or girl with FASD in the class, they better understand the situation and how to manage it."

One of the main concerns for families is the future of these individuals. Many of them are already adults, facing an uncertain future. They are people who need to be integrated to their full potential, with suitable jobs, the possibility of living independently, housing solutions adapted to their situation, etc. But these types of strategies and public policies are difficult, progress very slowly, and are not at all easy to implement.