Adult daughter refuses diagnosis

I'm an AS person, how am I coming across? Communication can be very problematic for us, it says here.

If your daughter is ASD, her behaviour as you describe it is normal. She is a normal AS person. Normal AS people are not like normal NT people, we are different. Not ill, not 'damaged', just different. If you can possibly persuade her to come on here and chat, she may find out that she is not alone. She'll be very scared, but there's nothing to be scared of and everything to hope for. We are a community of her kind of people here, we welcome new chums, and we try our best to understand and care for each other.

Or, just tell her we 'get' her. Parents of AS people will 'get' you two, too!

One aspect of our difference is that we are hypersensitive, and this varies but we cannot tell you why. Imagine if you can, all of your senses being made acute. Your ears hear a pin drop, literally, in the other room, light blazes in your eyes when other people are simply comfortable with the light level, you smell funny odours that other people simply cannot detect, someone touching you feels like they have put a hot iron on your skin. The more sensory input we get, the worse it can get.

This is very real to us. When our senses can't take any more accumulated overload, we go into meltdown. At the right time, any tiny thing will set it off, like the last straw breaking the camel's back. Our behaviour during meldown is horrible and destructive, we know that, we can't stop it even though we want to, it simply takes us over. Tired for days afterwards. And ashamed of it, and angry that it 'got us again' and unable to explain it to ourselves, let alone anyone else. Commonly, pre-diagnosis, we can be very lonely and isolated.

Your daughter's behaviour as you describe it is typical. Supermarkets, for instance, are hostile for many reasons - funny lights, too much noise, sudden noises (especially!) too many people, being touched. In these circumstances, we are likely to behave that way and probably won't know that we're doing it. Don't worry about people's comments, people are ignorant, but my answer to the 'what have you done' comment would be 'had a disabled child, why, are you offering to help. We'd be glad of the asistance'. Watch 'em run.. .

I know this is not what you intend, but here is the type of thing that might be happening for her. If you tell her what to do, you are giving orders and she will refuse. If you ask her twice or sound in any way harsh, you are frightenening her. If you use a phrase like 'oh why don't you just do what you're asked' she's hearing you criticise her for existing, and if you touch or hug her, you're physically causing her pain. If she is undiagnosed ASD, she won't even understand any of this herself, and if you suggest it, you're saying she's 'not normal' and she may have been hearing other people call her that for years. Loony, mad, ***, nutter - there's a long (but wholly untrue) list.

Yes, I know it sounds screwy to you, and that's why you struggle to understand, and she struggles to be understood. None of this will make any sense to her, she'll just have some idea along the lines that the world hates her and wants to pick on her all of the time. You can't change who she is, but you can change the way you are with her. You sound like you need reassurance that she will be OK (there's a good chance now) and I think you need lots of help and advice. It's all here, and we all want to help.

I think you need to talk to the Helpline.

I'm an AS person, how am I coming across? Communication can be very problematic for us, it says here.

If your daughter is ASD, her behaviour as you describe it is normal. She is a normal AS person. Normal AS people are not like normal NT people, we are different. Not ill, not 'damaged', just different. If you can possibly persuade her to come on here and chat, she may find out that she is not alone. She'll be very scared, but there's nothing to be scared of and everything to hope for. We are a community of her kind of people here, we welcome new chums, and we try our best to understand and care for each other.

Or, just tell her we 'get' her. Parents of AS people will 'get' you two, too!

One aspect of our difference is that we are hypersensitive, and this varies but we cannot tell you why. Imagine if you can, all of your senses being made acute. Your ears hear a pin drop, literally, in the other room, light blazes in your eyes when other people are simply comfortable with the light level, you smell funny odours that other people simply cannot detect, someone touching you feels like they have put a hot iron on your skin. The more sensory input we get, the worse it can get.

This is very real to us. When our senses can't take any more accumulated overload, we go into meltdown. At the right time, any tiny thing will set it off, like the last straw breaking the camel's back. Our behaviour during meldown is horrible and destructive, we know that, we can't stop it even though we want to, it simply takes us over. Tired for days afterwards. And ashamed of it, and angry that it 'got us again' and unable to explain it to ourselves, let alone anyone else. Commonly, pre-diagnosis, we can be very lonely and isolated.

Your daughter's behaviour as you describe it is typical. Supermarkets, for instance, are hostile for many reasons - funny lights, too much noise, sudden noises (especially!) too many people, being touched. In these circumstances, we are likely to behave that way and probably won't know that we're doing it. Don't worry about people's comments, people are ignorant, but my answer to the 'what have you done' comment would be 'had a disabled child, why, are you offering to help. We'd be glad of the asistance'. Watch 'em run.. .

I know this is not what you intend, but here is the type of thing that might be happening for her. If you tell her what to do, you are giving orders and she will refuse. If you ask her twice or sound in any way harsh, you are frightenening her. If you use a phrase like 'oh why don't you just do what you're asked' she's hearing you criticise her for existing, and if you touch or hug her, you're physically causing her pain. If she is undiagnosed ASD, she won't even understand any of this herself, and if you suggest it, you're saying she's 'not normal' and she may have been hearing other people call her that for years. Loony, mad, ***, nutter - there's a long (but wholly untrue) list.

Yes, I know it sounds screwy to you, and that's why you struggle to understand, and she struggles to be understood. None of this will make any sense to her, she'll just have some idea along the lines that the world hates her and wants to pick on her all of the time. You can't change who she is, but you can change the way you are with her. You sound like you need reassurance that she will be OK (there's a good chance now) and I think you need lots of help and advice. It's all here, and we all want to help.

I think you need to talk to the Helpline.