Table 1.

Maternal experience of raising a daughter with autism spectrum disorder

Skepticism and delayed diagnosis	‘We started bringing concerns with our pediatrician really early. A lot of times they were like, oh, she is a late bloomer, but I still felt like there was more going on’. ‘I kept asking to have her evaluated, but with her being a girl, it was even less likely that the pediatrician would refer us. I remember her saying that this is usually a boys’ thing and she is only a little different’. ‘As the years went by I researched more. I kept asking for more and more tests because she appeared to be so very normal to most people but if you hung out with her for a while, there were just things that were so different’.
Disbelief from others	‘Most people, once I said, she got Asperger’s, would look at me like they didn’t believe me. When she was younger she was so cute and so petite and so doll-like that everybody just thought: “She is adorable, what are you talking about?” That cute charming-ness chattiness about her, people don’t associate with autism’. ‘We live in a small town. Most people don’t know anyone that has autism, and if they do it’s probably going to be a boy, because autism is sort of a boy kind of issue. And my daughter was so sweet and people would just say, “What’s your problem? Why are you labeling her?” ’
Lack of information	‘There isn’t much evidence or research for girls on the spectrum as there is for boys. That leaves you hanging a lot and asking how I will be able to support my kid?’. ‘I had a hard time finding information that would help me because she was a girl. Everything I read was so much about boys. It was so frustrating and irrelevant. There was just nothing there that could help me figure her out.’
Increasing social demands	‘Now that Child is almost 15, she is expected to get dressed in a way that somehow fits in. She hates shopping and cares only if her clothes are comfortable. So I have to buy her stuff and to make sure that she fits in and doesn’t stand out in what she wears’. ‘I think that expectations are different for boys and girls and that’s worries me a lot. She is expected to be social, to be involved in girls talking, to be tactful and she is not and will never be. It gets harder as she grows up’. ‘Most girls her age is constantly on the phone, talking and texting, hardly showing their face and she has no one to call to… I think her, as a girl, being always alone, is more heart breaking. I don’t really know why, but that’s how I feel’. ‘In fourth grade, she could read and comprehend at college level but the public school kept saying that they didn’t know what to do with her. They had never seen anything like this. And no one asks her to do things or to hang out. She was never invited to sleepovers. So, when we went to our college tour she met this boy who is very much like her, very quirky. He invited her to the prom in Another state. So, I flew her there and we went, because she’s never been invited to anything in her life, and she got to go to a prom with a guy’.
Struggling with puberty and hygiene	‘The hardest part is puberty. She does not like having her period, having breasts. She does not want to have kids. Everything with growing up and becoming a woman she does not like. I just tell her that this is part of life and try to make it a positive thing.’ ‘Every time I have to remind her … go get a new pad on, go soak this, go wash that. You know you are going to start feeling cranky because your cycle is coming, you have to be prepared for that. I even put her on the pill so she can easily remember her period.’ ‘She is not taking care about her hygiene without being told. I keep on telling her, you just worked out, you really smell. Do I care more because she is a girl? I guess to some extent’. ‘When a boy gets on the bus, smelling after soccer practice it’s not a big deal. It’s acceptable. When a girl has all her shirt wet and she smells, well, that’s unacceptable. I am not sure what I just said fits a feminist attitude, but this is life. I don’t want people looking at her. I can’t let her go around like this’.
Disappointment about physical appearance	‘When I am helping her bathe, I noticed her hips have stretch marks and around her breasts. She is basically my size, but a couple of inches shorter. It is a whole other adult in the house. And part of me is not only worried about the health consequences of gaining weight but also frustrated and disappointed because I wanted her to be thin and pretty. To buy her all those amazing summer dresses’. ‘When she was little she was picky and then she narrowed her diet and it’s excessive. All she eats is Cheese-it and Gold fish … if we go out to someone’s house, she just won’t eat. The same at restaurants. If they don’t have chicken strips or Pizza she just won’t eat. So that’s a problem. It’s a problem socially … we did nutritional therapy and it was very unsuccessful. So she was really skinny, crazy skinny and now that she has a lot more freedom and with her driving license … she is eating a lot more carbohydrates and sugar and she is also … she is very large chested and that made it very hard for her to exercise because she is very uncomfortable. So that combination … she used to be extra thin, pretty and fit … until she passed puberty and now she is gaining weight’.
Sexuality and vulnerability in future relationships	‘The whole issue of boys and dating makes me very nervous. I worry that she will be taken advantage of. She doesn’t pick up on those cues and that’s a huge concern. And I don’t even know what to do about that. I don’t trust in her ability to look critically at somebody or look objectively at someone’. ‘She is very naïve and trusting. And voluptuous. She shouldn’t have that type of body. She is very beautiful. That wouldn’t be a problem if she would have been a boy’. ‘She states that she doesn’t want to get married. It’s pretty unusual not to want a boy to affirm your existence. She makes a lot of friends online, which is less threatening for her. I do hope that college will allow interaction with young man that will give her opportunity to learn whether or not this is something she wants to pursue’. ‘She wants to be able to go to her friends’ house. She wants to spend the night. She wants to go with people who love her. She wants to be out there, doing what her friends are doing, and so we are already sort of not letting her do everything. But I think that’s going to be enhanced, as she grows older. How do we explain that to her in a way that doesn’t just set her on a path that she is not fearful to be out there? That she doesn’t want to get away from me? She talked to me about running away when she was really young, like 4 or 5 years old. She ran away and lived in a bricked house’.
Worries about future functioning	‘It’s easy to say, oh, here is a boy with Asperger’s and he likes working on the computer so we will teach him how to do that and he will end up working in Microsoft. I don’t know if there is enough support to help girls be successful. I think with girls, their heart is wired differently, and you can’t apply the same approach to a boy on the spectrum and a girl and teach them in the same way. Is the best she is going to be is a cashier?’ ‘I wanted her to have children. That was the hardest thing just to flip back. When Child found out that she was autistic, she never wanted to have children because she doesn’t want to pass that down’. ‘She doesn’t see herself ever having children. I can’t envision it either in my mind. It makes me sad but I try to put it away. I want her to have someone that she loves that she can really be close to’.