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Is it autism??

NAS39189

Hi,

its my first time here, and I could really use some good advice. I have three girls, a17 year old and 12 year old twins. One of my teins, Amber, is struggling a lot. We all are. For about 18 months now Amber is getting worse. It just started with crying, not knowing why but she was getting very upset. It kept going so I took her to the GP. We were referred to CAHMS it the may of 2016, we were eventually seen in April of 2017. I’m sure it’s not in every case but we are still dealing with them, but they aren’t much help at all. We have been assigned to a lady who is a mental health nurse. Amber is getting worse for example she screams, like she is being attacked, has horrendous panic attacks, she slaps and punches herself in the head repeatedly, she claws her face, pulls her hair. Ambers sleep pattern is all over, her eating is suffering, Amber and her twin sister Morgan aren’t identical but extremely similar, but now Morgan looks older,where Amber is smaller looks thinner, and just so fragile. Amber doesn’t liked to be touched, conferred, or hugged, it’s like hugging a stick. Sometimes she covers her ears and says everything is to loud, when it isn’t. She’s very very talented in drawing. When she finds she likes something she researched it to the point of being an expert. I’ve told CAHMS several times that I’m thinking she could be on the scale, but the mental health nurse says no, because she can hold a conversation and is very articulate!! Things are so stressful at home it’s not a nice place to be. Me and my husband are arguing all the time, her twin sister is really suffering because of it all. She gets very frightened when Amber has an episode, I don’t know if it’s a twin thing but they seem to feel a lot of what’s going ineith the other. Ambers missing a lot of school, but they are being brilliant.

Im so sorry it’s been a long message, and I’ve tried to include soy, but I feel strongly that something else is st play then just anxiety as the say, I’m just a frightened confused parent wanting answers. 

Many suggestions? Does it sound like it could be?? Or am I looking too far in yo things 

thanks 

catherine xxx

Parents

  • If Amber isn't on the spectrum all I can say is she's doing an incredibly good impression of someone who is. I agree with the advice to seek a second opinion. In particular, girls and women with ASD can be quite verbal. This may be because we're more socialised as children.

    One thing which particularly struck me from your message is when you say that noise is too loud for her and which you've dismissed. I've had this same issue my whole life and dismissing it will make it worse for your daughter. Many autistics experience external stimuli in a far more intense way than neurotypical people do. So while the noise level might be fine for you Amber's telling the truth when she says it's loud enough to distress her. It's also possible that she's picking up on sounds you don't hear yourself. I can often hear small noises that other people don't until I mention them. I've had to stop watching interesting tv shows, for instance, because there's been some plinky or discordant sound or music going on. Most people wouldn't notice it but to me it's excruciating - actually physically painful as well as emotionally. It's like someone drilling into my forehead, it has that level of physicality to it. If a particularly bad noise takes me by surprise you can find me curled up in a ball in the corner of the sofa screaming (and I'm not 12 years old).

    My suggestion would be to keep things as calm as possible at home. If she doesn't have her own bedroom to retreat to maybe try to provide a space for her where she can be when she needs to get away from everything. If you can get a time when she's calm maybe try asking what she needs from her family to keep her as stress-free as possible. She may not know at that age, but it could be worth exploring what makes her feel worse and what makes her feel better. Maybe you can identify together strategies to help her. The family's worry and distress may be making her feel worse, too, so if you can keep things as calm as possible (difficult, I know, especially with three young people in the home) it may give her some respite.

    Good luck getting the answers you need and in supporting each other.

Reply

  • If Amber isn't on the spectrum all I can say is she's doing an incredibly good impression of someone who is. I agree with the advice to seek a second opinion. In particular, girls and women with ASD can be quite verbal. This may be because we're more socialised as children.

    One thing which particularly struck me from your message is when you say that noise is too loud for her and which you've dismissed. I've had this same issue my whole life and dismissing it will make it worse for your daughter. Many autistics experience external stimuli in a far more intense way than neurotypical people do. So while the noise level might be fine for you Amber's telling the truth when she says it's loud enough to distress her. It's also possible that she's picking up on sounds you don't hear yourself. I can often hear small noises that other people don't until I mention them. I've had to stop watching interesting tv shows, for instance, because there's been some plinky or discordant sound or music going on. Most people wouldn't notice it but to me it's excruciating - actually physically painful as well as emotionally. It's like someone drilling into my forehead, it has that level of physicality to it. If a particularly bad noise takes me by surprise you can find me curled up in a ball in the corner of the sofa screaming (and I'm not 12 years old).

    My suggestion would be to keep things as calm as possible at home. If she doesn't have her own bedroom to retreat to maybe try to provide a space for her where she can be when she needs to get away from everything. If you can get a time when she's calm maybe try asking what she needs from her family to keep her as stress-free as possible. She may not know at that age, but it could be worth exploring what makes her feel worse and what makes her feel better. Maybe you can identify together strategies to help her. The family's worry and distress may be making her feel worse, too, so if you can keep things as calm as possible (difficult, I know, especially with three young people in the home) it may give her some respite.

    Good luck getting the answers you need and in supporting each other.

Children
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