Advise please

Thank you once again for taking the time to reply, you can't know how much it helps! You have confirmed to me what I  instinctivelyknow I  should do. I don't really know much about autism but what I have read makes me realise I want to try and protect my daughter from some of the difficulties adults can experience if they remain undiagnosed. I know it isn't a guarantee that she won't experience difficulties but hopefully we can get some help. I think your experience will be very valuable thanks again :) 

Hi Logic, if its any consilation my daughter is just turning 11 and was diagnosed last December. After my daughter was diagnosed the learning mentor at her school went through a booklet called 'i am unique' and it basically explains in childrens terms about autism and there is bits she can fill in herself. If gives some examples of things that she may be encountering for example: i make lots of friends easily., and she would have to tick the box if it is relevant to her. I have found that since she has been going through this booklet she is more aware of why she does things and it has helped some children in her class to understand her as she is getting confidence in saying to people i act like i do because im autistic and different.

I think it is very confusing for children as they do things and dont really understand why but once they have a little understanding then they start to feel a bit more relaxed and take things as they come.

As for people saying you are labelling....sometimes the only way to get the help is to have the label. It is hard to treat and understand something that doesnt have a name.

Likewise if your child doesnt have an understand of why she is like she is it may become harder for her as she is growing up.

My daughter knows and she says i am me, i am me with autism, nothing changes i and others just understand me better.

Hope this is of some help to you.

Definitely tell her, because in the long run at least she will know you were honest with her and kept nothing hidden. I was not diagnosed until age 21, and admittedly I would not have accepted I had any condition at your daughter's age because I wanted to fit in and be considered 'normal', but with hindsight I wish the school had been more proactive and that they had got me assessed for asperger's.

I think that how you describe the condition is the most important thing. Call it a condition and not a disorder or a disability, because although it is a disability, a child might not want to accept they are disabled, mainly because it is not a very nice word. I accept I have a disability now, but whenever my parents used to suggest I was disabled I would get all defensive because as far as I was concerned I was 'normal'!; children find it hard to understand nuances. Tell her that asperger's syndrome makes her a very clever young women with great gifts, which people without the condition don't have: she has a logical and original mind. But this mind can get overloaded because it is extra sensitive to outside stimuli. Tell her that we all have strengths and weaknesses, and that her weakness happens to be social skills, just like some people find other things difficult. Framed in this way, she is less likely to get defensive and is more likely to accept her aspergers.

Hi Logic - I hope my comments help you.

I have HFA and was diagnosed as an adult but I knew as a teenager I was 'different' to all the other kids and got bullied because I was seen as odd or a bit weird.

Since my diagnosis I feel comfortable with who I am and I can explain to people about my condition - it's not an illness or a problem, it's a condition! The majority of people are quite understanding and make allowances but there are those who are still horrible to me but I ignore them.

I think you sound like a good Mum. My Mum has helped me a lot to understand my condition and help me cope with it. We talk about it especially when she sees one of my meltdowns coming on. She knows what to do and is pretty good actually at it now.

I think you should keep open communication with your daughter - she is special and will discover as many of us do that she has talents and gifts that others don't and you can help her find them.

I hope that helps.

 Thank you both for your replies they have been very helpful. I have begun to talk to my daughter about why she feels the way she does and it could be something called aspergers. I have explained to her that because she hears, feels and smells things so acutely it puts her body on 'red alert' and that can be why she has 'meltdowns'. She is dyslexic so is already aware her brain processes infomation differently from non dyslexic brains.She is on a difficult journey, she is very aware she is different from most of the other girls in her class, I just want to help her understand how special and unique she is. Hopefully one day she will understand this, but gosh it's not easy!!! :)

I am an adult diagnosed with Aspergers Syndrome 3 years ago when already in my fifities.  Of course I can't turn the clock back and know how I would have felt if I had recieved the diagnosis earlier, but I can say that recieving the diagnosis has been a major relief which has allowed me to understand myself and the trajectory of my life much, much better, to the extent that I feel passionate about the need for understanding of the condition and current develop and deliver training about it.

Before the diagnosis I experienced a lot of depression and had tried various forms of psycho therapy including analysis to try and address this - I now believe that the reason this was so ineffective was because my autism was not recongised - and my difficulties were seen as the psycological rather than neurological.

I have two sons, one of whom is 22 and we believe is also on the spectrum and one who is 19 and not on the spectrum.  The older one says he has been helped by knowing about AS (I just told him about my diagnosis and he immediately recognised the traits in himself, as I hoped he would) and we have gotton on much better since understanding the condition.  It is also noticable that although both boys have a similiar IQ live is so much easier for the younger one.

I have spoken to many people with ASC diagnosed at varying ages, and of these only one has said she was glad she was not diagnosed earlier - everybody I have met (including this individual) has found diagnosis helpful, as they finally understand why they are as they are, consider steps that can be taken to address difficulties, and connect with others with the condition.  However I have also met parents who are very resistant to either the idea that their child could have the condition or to "labelling" a child they believe has the condition.

AvaRuth Baker a doctor who herself has Aspergers says "Diagnoses are often thought of as labels but they could also be considered as signposts. Signposts do something more than labels they help people find their way on a journey"  She has written a relevant paper "Invisible at the end of the spectrum" which is available on the ASK (autism spectrum kiwis) website, as is a booklet written by people on the spectrum about the impact of ASC and its diagnosis on their lives (this costs and I am not sure if it is currently available internationally - I am personally going to try and get it published here).  There is also a book that I believe is available on Amazon called "women from another planet" that contains the stories of women and girls with ASC.

I also did a module at the OU on ASC and on the course there was a mother of a very bright girl with ASC on that course who said that diagnosis had greatly helped her daughter. I also know one young man who only found out he had ASC because he listened to a tape his mother had hidden away of his diagnositic interview with Dr Tony Attwood when he was five.  He was glad to know and upset his parents had not told him.

So in short I agree with your gut instinct, I strongly believe in the vast majority of cases it is helpful both for a person to know they have ASC.  Good luck to you and your daughter on your journey of discovery.

Personally, I would rather know. My parents kept a diagnose from me (not ASD - waiting to be diagnosed with it) and I was really upset that they kept something like from me. Especially as I was struggling at school and really could have done with support.