As we said in the previous article, between 17% and 23% of parents of autistic children have an extended phenotype of autism, that is, they present some autistic features, without actually meeting the characteristics required for diagnosis. In addition, autism has a genetic component, and this means that the parents of an autistic child may share some of their child’s traits, both positive and negative: their sequential processing style, attention to detail, or their sensory hypersensitivity, among other examples.
However, there are also autistic fathers and mothers -who meet the criteria for the diagnosis of autism, and not only for the extended phenotype-, although the percentage is not very clear, since there are still many undiagnosed adults -mainly women-, due to underdiagnosis and the popular belief that, if you are functional and autonomous, you cannot be autistic, despite all the suffering of masking your personality.
This is, in a way, what happened to Yolanda, the main character of today’s story; she discovered that she was autistic at age 50 -after a lifetime of academic failure and severely damaged self-esteem-, after her son’s diagnosis at age three. She explains it to us in her own words: “At the age of three we took my son to the doctor because we thought he was deaf, since he didn’t talk or turn when you called him, and, later, they diagnosed him with autism, ADHD and dyslexia. And then I thought I could also be autistic, because I saw that some of the things that happened to him also happened to me. Finally, Dr. Hervás diagnosed me, and this helped me get rid of the feeling that I was weird or stupid”.
Challenges and difficulties of motherhood
Regarding her desire to be a mother, Yolanda says that she was terrified of giving birth, but she overcame that fear at the age of 39, when her son was born. At that time, she also says that she suffered from “severe postpartum depression” and her anxiety increased a lot, because she didn’t have the support of her parents -they had died before the child was born- and she lived near Sant Vicenç dels Horts with his partner, away from other friends in Barcelona: “My son’s father went to work every day and I was alone all day. I had two dogs, and they were the ones who helped me the most in this process. Sometimes I think I wouldn’t have survived without them”.
The child’s first years were “continuous suffering” for Yolanda: “My son ate very little, he woke up at night, he had a very irregular schedule, and it made me very unbalanced. We understood many things with the diagnosis”. However, despite her difficulties, Yolanda affirms that she has an “incredible bond with my son. It’s the same bond I had with my mother. And it’s so strong that I can’t describe it with words.”
Diagnosis, prejudices and stigma
Yolanda explains that her diagnosis changed her life: “It helped me to understand myself, to forgive myself, to not be so hard on myself and to help my son better. I empathize a lot with him”. However, she explains situations in which they judged her capacity as a mother: “I couldn’t breastfeed because I was taking medication for anxiety and depression, and at the hospital they kept asking me why I fed him with the bottle, and they looked at me badly. They always try to make women feel bad about everything, we have to reach an impossible ideal”.
Later, she lived a very awkward situation with the family of her partner: “My son only wanted to eat jars, due to sensitivity to textures. And, one day, at a family meal, one of my ex-partner’s aunts said to her daughter: ‘you’ll have to learn to cook, because, if not, your son will end up just like this poor kid, who only eats jars’, and pointed at my son. I had a very bad time, because I couldn’t say anything and the whole family was there”.
Values, teachings and quality of life
Yolanda would like her son to share some of her hobbies: “I want to show him my love for nature, for animals, for the environment. And also the love for my culture, my city and my neighbourhood, Poble Sec; the other day we went to Montjuic and I explained things to him about the Olympics, where I participated. And, above all, I want him to understand that all people are equal, from the richest to the poorest, and that, if he can help someone, he has to do it without hesitation”.
Yolanda also considers that love for culture is essential: “It is very important to study and have culture. Due to the difficulties he has at school, my son doesn’t have a good time in class, it is very difficult for him to go. But I try to make him see that he is a very lucky child, and that other classmates have school far away or that their parents don’t have the same resources as us, and he has to take advantage of all that”.
At this point, Yolanda proposes some changes that should be made in society to improve the quality of life of autistic people: “We need more help in everything, economically and at schools, where there are children with all kinds of difficulties, and teachers can’t help everyone. In addition, therapies are very expensive, and it is difficult to maintain a job. At my job, currently, they are helping me a lot with the breakup between me and my ex-partner, so that I can spend more time with my son, but, if not, it would be very complicated. And besides, my ex-partner has a good job and has money, but how many people can afford all this? And, especially in adults, how many people will die without diagnosis?”.
For Yolanda, dating boys was not easy at all: “It took me a long time to have a partner, I was a pretty immature person and I went at a slower pace on those issues. Also, when I met someone dancing, I couldn’t hold her gaze and ran away as soon as I could. I didn’t understand why this happened to me. I met the father of my son at the age of 33, and he has been my longest partner. We were fine, but when he left me, 16 or 17 years later, he told me that he couldn’t stand my way of being anymore, my rigidity. I felt very bad. However, he has always helped me financially with the child”.
Finally, Yolanda explains how she believes a healthy relationship should be: “The couple has to face problems together, and it is very difficult to do so if there is economic inequality or they have very different personalities. I would like to find a person who accepts me as I am, with my difficulties and my strengths”.