Did you know that in Spain alone one in 100 people has an intellectual or developmental disability ?
In total, more than 268 thousand people have a recognized intellectual disability in Spain. And of them, 57.4% are men, and 42.5% women.
Children with an intellectual disability need specific support academically, psychologically and sometimes even medically. That is why it is so important to make these types of syndromes visible and make them known, also to break down myths and taboos.
In this article we collect the most frequent syndromes in childhood that cause intellectual disability , as well as the associations, from different parts of Spain, to which to go if your child presents one of these syndromes.
Associations are usually created by families with children with the same disorder , who decide to get together and give each other mutual support, make the disorder visible and known, inform and, above all, advise new families who decide to turn to them for help.
If your child has just been diagnosed with an intellectual disability, remember: you are not alone! There are many people who have gone through the same thing before you; You can ask for help.
Intellectual disability: most frequent syndromes in childhood
We are talking about the most frequent syndromes in childhood that cause intellectual disability (although there are many more), in addition to other associated symptoms that we will get to know:
Down syndrome is a genetic disorder associated with physical growth delays , characteristic facial features, and mild to moderate intellectual and developmental disabilities.
Its origin is the presence of an additional total or partial copy of chromosome 21.
Down syndrome: Associations to turn to
- Down Spain
- ASINDOWN Valencia
- Catalan Down Syndrome Foundation
- Iberoamerican Down Syndrome Association
- Iberoamerican Foundation Down 21
- Down Syndrome Association of the Argentine Republic (ASDRA)
X fragile syndrome
Fragile X Syndrome is the leading cause of hereditary intellectual disability ; We are talking about a genetic and hereditary disorder, related to the X chromosome, which manifests 1 in 4,000 boys and 1 in 6,000 girls.
Researchers Martin and Bell first described this disorder in 1943, and in 1969, Herbert Lubs identified that these cases were associated with a fragile zone on the X chromosome.
The syndrome causes intellectual difficulties ranging from learning problems to intellectual disability (which is usually mild or moderate).
It also carries symptoms related to the autism spectrum (difficulties in communication and interaction, restrictive patterns of interests, etc.) and ADHD (attention deficit hyperactivity disorder).
The disorder manifests itself in both boys and girls, although there are differences; in boys, the cognitive part is usually more affected , and in girls, the cognitive part is practically not affected, but the social part and mathematical skills are.
Fragile X Syndrome: Associations to turn to
If your child has been diagnosed with Fragile X Syndrome, there are different associations with families that are in the same situation as you, that you can go to, that will provide you with resources, support and information. Here is a list of the most important ones:
- Madrid Fragile X Syndrome Association
- Fragile X Syndrome Association Castilla y León
- Fragile X Syndrome Association of the Valencian Community
- Catalan Association of Fragile X Syndrome
Williams syndrome (or Williams-Beuren syndrome), also called monosomy 7, is a rare genetic disorder (occurs in 1 in 7,500 newborns), caused by a loss of genetic material on chromosome 7.
It was first described in 1961 by the New Zealand cardiologist John Williams and the German pediatrician Alois Beuren (hence its name).
Children with this syndrome present a series of symptoms and clinical signs:
- Mild or moderate intellectual disability with an average IQ of 60-70.
- Deficits in some areas (psychomotor skills, visuo-spatial integration).
- Slowing in the acquisition of motor skills and language, although it is variable according to each case.
- Highly developed sense of musicality.
- Very friendly, uninhibited and enthusiastic personality .
- Characteristic facial features.
- Cardiovascular and musculoskeletal system disorders.
- Alterations in the skin and endocrine-metabolic.
Williams Syndrome: Associations to turn to
- Williams Syndrome Association Spain
- Williams Syndrome Association Cantabria
- Williams Syndrome Association of Andalusia
- Catalan Williams Syndrome Association
Angelman syndrome is a genetic disorder that causes developmental delay, speech and balance problems, intellectual disability (usually severe), and sometimes seizures.
Children with Angelman syndrome tend to smile and laugh frequently, and have happy and excitable personalities.
The disorder is usually detected by the presence of developmental delays in these children, beginning between 6 and 12 months. For its part, seizures can begin between 2 and 3 years.
Angelman syndrome: Associations to turn to
- Angelman Syndrome Association
- Angelman Syndrome Association Spain
Prades-Willi Syndrome is a disorder of congenital origin (from birth), which affects various parts of the body.
Children with this condition are hungry all the time and end up developing obesity. They also develop mental disability, and have very poor muscle tone and underdeveloped sexual organs.
Prader Willi syndrome: Associations to turn to
- Spanish Association of Prader-Willi Syndrome
- Catalan Association Prader-Willi Syndrome
- Prader-Willi Syndrome Association Andalusia
Fetal Alcohol Syndrome
Another syndrome that causes intellectual disability in childhood is Fetal Alcohol Syndrome (actually, we are talking about a set of syndromes within this spectrum: FASD, or fetal alcohol spectrum disorders ).
This is the most severe form of fetal alcohol spectrum disorders, which occurs when the mother consumes alcohol during pregnancy, especially during the first three months of pregnancy.
This causes significant damage to the development of the fetus , mainly at the brain level. Three characteristic clinical signs of FASDs are:
• Abnormal facial features.
• Central nervous system problems.
• Problems and/or delays in growth.
Fetal Alcohol Syndrome: Associations to turn to
- Association of Families Affected by Fetal Alcohol Syndrome
- Association of families of sons and daughters with FASD
The importance of asking for help and sharing
Receiving the news that our son has an intellectual disability has an impact on our entire lives, especially on an emotional level, but also socially, physically, financially…
And it is not easy to face and navigate this situation, because it is unknown to many .
For this reason, Associations are recommended, because in them we will find a safe space in which to express what we feel and where we will receive support and information from families who have gone through the same thing as us and who will empathize with our situation.