Journalist and mother of an autistic child
"Autism is not a disease, it is a characteristic of a person."
Stereotypes, problems and the future of children with autism.
A person with autism must never be made invisible by their condition. To put it one way, autistic people have a social disability; they have more social problems than others. One of the things I noticed was that my son didn't play. As far as language or communication is concerned, he started to talk, and then he stopped. I now know that this is a reason to seek professional help as soon as possible. However, above all else, when you meet a person with autism, or when you're told that someone you love is autistic, it's important to remember that they're still the same person. It's easier to understand if we try to focus on the person rather than the diagnosis.
People often think that children with autism are little geniuses, but that's not true. Just like people who aren't autistic, they might be geniuses, but there's no reason they should be. There are a lot of other underlying myths surrounding autism. In my experience, people tend to think that autistic children are more disturbed than others and won't be able to look you in the eye, which isn't the case. My son would have no problem looking you in the eye, and he can smile in social situations. People also ask: "Is it OK to touch him?" Of course it is! There's nothing my little "doggie" likes more than to be tickled. There are a lot of myths surrounding autism, many of which are based on what we've seen in the movies and on TV series. Speaking of myths, I think people with Asperger's have to deal with a lot more.
After an autism diagnosis, you enter a very complicated assimilation process in order to try to find out how to react to the information you've been given in a way that's best for your child. There's not much help available and you'll feel very isolated from the rest of the world, including doctors and psychology professionals. Often, you'll be given a diagnosis and nothing more, nobody will take you by the hand and show you the way.
Some parents have to fight with pediatricians to obtain a diagnosis, while others are given one straight away. I think the situation has improved a lot in recent years. My son will be 12 soon and I've noticed that over the past ten years pediatricians and primary health care services have become better trained and more able to understand and diagnose a condition earlier. However, we still need to work on what to do afterwards. I felt very alone, and that's the impression I get from all families that receive a diagnosis of autism. You're left thinking, "OK, they say our child has autism. What do we do now? What school should they go to? Who's going to help us try to unlock our child's potential? What direction should we go in? We're overwhelmed by procedures. What should we do?"
With autism, there may be no visible signs. People are a lot more understanding if your child is in a wheelchair or has Down's syndrome or another visible condition that can be determined by their physical characteristics. In these situations, if your child's behavior is disruptive, people will just think they can't help it. However, if your child has autism, people might not be able to tell, even though they're perhaps more likely to come across this condition than any other. If you see me walking down the street with my son, you'll just think he's a lovely, normal blond kid who apparently has nothing wrong with him. Therefore, if his behavior is not what people are expecting, they'll be very quick to judge him. They don't stop to think about what they're doing and that judging someone is very easy, but not necessarily the right thing to do. They don't think about the fact that this child might be troubled by something they can't see and don't understand and that the child's parents are trying to deal with the situation as best they can and that the best thing they can do is either not say anything at all or try to help, without judging or criticizing, or forcing a family to leave somewhere, and all the other things that happen in these types of situations.
Find out more about Melisa Tuya
- Journalist and writer Melisa Tuya is a mother with an autistic child. She wrote the book 'Tener un hijo con autismo’ (Having a child with autism) to try to dispel the myths that are still associated with this syndrome. In this talk, Ms. Tuya explains why it's important to try to see the person behind a diagnosis of autism. Alberto Soler is a Psychologist and has a Master's Degree in Clinical and Health Psychology. He is the co-author of the book "Hijos y padres felices" (Happy children and parents) and the author of the vlog "Píldoras de psicología" (Psychology pills), where he offers advice on education and discusses the dangers of teaching children to blindly obey orders rather helping them to learn how to think critically and autonomously.
- What happens when an autistic child goes to school?
Education is a real headache for many families, a nightmare even. That's just how it is. Often, you get the diagnosis when your child is about two or three, which is when you're trying to decide which school to send them to. Or, you might get the diagnosis a bit later when your child is in kindergarten, and you have to decide whether or not to move them. The number of schools you can apply to decreases substantially when you have a child with special needs. Then there's the debate about inclusion, specialist or special needs schools. I thoroughly believe in inclusion. I think this is what we should aspire to and aim for, because everyone has a right to be included. I would want my son to go to the same school as my daughter. Not only for reasons of family management (although that does have a part to play), but just because it would be the ideal arrangement. However, we've a long way to go yet before we achieve this ideal. Real inclusion isn't happening anywhere. From what I've seen, only children who are better able to cope with a school's curriculum are likely to be accepted. In my experience, the majority of children with autism who are in kindergarten go to inclusive schools, i.e. ordinary schools. Once there, they get different types of support, but almost all of them do get in. Then, as the workload and curriculum gets more demanding, if a child can't cope with this, they start to fall behind, and that's when they might end up in a special school. Class sizes in these types of schools are smaller, perhaps just four of five children per class, and the teachers are well-trained. Most children with autism will eventually go to a special school, with very few making it to an ordinary high school. The ones that do make it to high school are those at the top of the spectrum who have had their needs better met. This is not real inclusion. There are no resources. That's why, even though I thoroughly support inclusion, I'm also a realist, which is why after my son finished kindergarten he went to a specialist school that only accepts children with autism. The state offered us access to a special school that accepted children with different types of disabilities.