Devastated by my daughter's diagnosis

She is your firstborn and YOUR child - while you may not be 100% eleoquent you always want what you feel is best for your own baby and it is necessaary to always be fighting on behalf of our babies when they don't fit in. You come across as a Mama Bear not a bad parent.

The diagnosis itself is not going to change anything - it tells you why your daughter is the way she is not what she is or can be. It should mean she is understood better by the adults around her - teachers etc. and that should then mean she receives a good education. It should also mean that consistency is shown between different sets of adults and she can be supported in new environments. You should be blamed less - she is not a result of poor parenting.

That being said, she is unlikely to ever care about "fitting in" - this could be a good thing as she follows her own interests and doesn't give in to peer pressure but she is always going to struggle with social skills. With my daughter it hurts everytime kids won't play with her and everytime she just can't understand playgroud dynamics - it is not so much disappointment in her but I can see her hurting and I can't fix it. As a parent you want to protect and doing that when your child is the odd one out... it's really tough.

Clothes and appearance - this is what works for us - L (my daughter) hates having her hair tied back so every 3 months we have it cut and this costs alot more than a standard kids cut but it is in the quiet room of a hairdressers and they bring us each a hot drink. L likes yellow best so a bit of each outfit is always yellow. She likes to climb so tight trousers are out so she wears jeggings not jeans. I can sew (a bit) so we take labels out and put soft fabric over every seam or choose soft fabrics. Lush are a good shop - our local one let us come before they opened to smell everything and have a play so L now has her own soaps and things she likes to use.

What works for us may not work for you but if you can redirect the anger you feel at the diagnosis into other solutions then the two of you can handle this. You are her greatest advocate and this is a diagnosis that tells you what is hard for her - nothing is impossible.

Scottish Autism had an online programme called Right Click and one version is specifically about women and girls. There is also a website called The Girl With The Curly Hair Project which is, unsurprisingly, created by a girl who is autistic. So there are two resources by or about girls. Right Click has various videos, so that could help you to see some real people without having to physically go out in public and meet people so hopefully it will help you counter some of your embarrassment.

Hi, CantBelieveIAmHere,

I do like your user name by the way.

As for having never met any other autistic girls before, only boys - well aside from knowing your daughter, the diagnosis or recognition of autism in females is actually very difficult in higher functional cases, as girls are more predisposed to social interactions and fitting in collectively.

I must say though that I have met several autistic females who were nothing but shining examples of Femine elegance, and were very fashionable in the designer clothes sense - so be careful; it is a very pricey state of affairs after all is it not?

Anyway, I can really appreciate that your dreams for your daughters success in life socially and so forward has taken a major blow, I mean they do not call a ASD diagnosis a life changing experience for nothing! It will take time to adjust - I was for instance diagnosed two years ago, and I only really got used to it about a year or so through that time.

Let yourself recover, get used to the reality check, and adjust as you go.

And remember, Ferret did warn you about the chracter of his communication, yet he was being informative - he was not actually attacking you. Granted - the type of information he provided is not usually addressed so directly or openly - if in fact at all in most social arenas for reasons such as your experience. It must of been so difficult.

Recall though that this website is used by alot of people on the autistic spectrum - and some of us have difficulty understanding what is considered socially acceptable, just as you did not understand the probable upset your post could cause for some here either. We all make mistakes though, all of us, yet we generally here let our mistakes become retakes and move on together better informed.

I wish you, your daughter and your family all the best.

D

Well, I'm a woman now and therefore was a girl...

They explain in various places why this was seen as a typical boys' problem for a long time. They were just a bit ignorant when it came to girls (which is easy when the signs in boys are often more obvious and perhaps more disturbing in school while they are often more subtle in girls) - it doesn't make your daughter any less feminine. Nor does not wearing fashionable clothes. After all, she is only 9 (although she may always prefer comfortable clothes but there's absolutely nothing wrong about this).

Perhaps try and meet someone with an autistic girl then! The NAS has local branches - maybe yours can help with that.

Another problem I've got is that to me the diagnosis feels unfeminine. I've never met any other autistic girls before, only boys.

Hi CantBelieveIAmHere,

Please try not to be so angry with what people say here, after all many (most in this discussion, I guess) can identify with your daughter to some extent – we were that sort of kids in one way or another. And it’s difficult not to feel somewhat sorry for your daughter who may well be trying hard to be the girl you want but just can’t do it. She’s not trying to wind you up by not being well-behaved. Maybe she is overwhelmed by some situation, maybe she just doesn’t really understand what is expected of her or can’t do it and then gets upset about this? This diagnosis has not changed her, it just tells you why she behaves the way she does.

It’s also difficult not to take it a bit personal because it hurts and it's heartbraking to read how you describe your daughter in such a negative way where the positive things you do mention seem to count rather little. Our parents probably all had expectations we can’t quite live up to but on the other hand we may also have exceeded some of their expectations. Having gone to a ballet class or not makes not that much difference in later life, I’d think, unless you want to do this as a job. If your daughter enjoys it then she should of course go there, but from what I’ve seen of ballet classes it involves a lot of discipline and parents are often very (maybe overly) ambitious. If your daughter struggles every lesson to fit in, does perhaps disturb the lessons and will be told off for that, and doesn’t want to go there, then perhaps this just isn’t the right thing for her. Have you asked her what she would like to do instead when you took her out of those classes? Obviously interests can change very quickly at that age but it may be worth to let her choose something she would at least like to try. She’s also not going to ruin her life by not wanting to wear fashionable clothes – lots of people don’t do this for all sorts of reasons and although they may not end up in the fashion industry they don’t experience any other disadvantages. It’s not all about the look! Your picture of a perfect daughter seems very narrow – perhaps you are rather trying to make her be the girl that you wanted to be yourself but were not? You won’t find people here that tell you how to successfully fight against the way your daughter is. Some will understand why you feel unable to accept it, some less so, but ultimately I think the vast majority will agree that this is the only way forward.

Not behaving the way it’s expected can be a problem, no doubt, but hopefully with having this diagnosis now both you and your daughter can get the support needed and will understand better what it difficult for her about certain situations and learn some strategies to deal with them. She needs someone who stands by her, someone who understands her difficulties, supports and encourages her and makes her feel good about the things she does well. And as her mum the most logical “someone” is you!   

I want her to look pretty, wear fashionable clothes, fit in. She is a pretty girl and I want her to make the best of herself. When I was pregnant (she's my firstborn) I was desperate to have a girl. I wanted her to go to ballet - we took her out of ballet but I'm going to be putting her back in as I'm hoping it will help her social skills - and be bright (which she is) and I wanted her to be a popular child. I never was and I don't want her to go through what I did.

Those of you who say that other children aren't perfect all the time...my other children are far better behaved than she is.

The diagnosis is such an ugly thing. I can't accept it as a good thing at all.

I haven't got the words to reply to all of you. I realise there's no point in replying to some of you because I know I'll be attacked whatever I say.

CantBelieveIAmHere - can I ask more details? Is your daughter high functioning ASD? What has devestated you so much? What did you plan for when you had a baby? What level of pride in her appearance do you want?

Your child is healthy. The diagnosis has explained your child but not changed her. She can now get appropriate help and support, for example, that can teach her how to interact with other people.

I wouldn't go as far as saying autism is a gift but it's definately not a disease. The brain is wired differently and different IS and can be a good thing - you haven't got "normal" but you never had normal and haven't lost that.

Hi CantBelieveIAmHere, I’m such a daughter too – my mum found out substantially later though and seems sort of glad now because lots of things suddenly make sense. After I told her about this diagnosis (and I only did so because she wanted to know what I had been in that town for) she came up with a whole list of things that were weird, embarrassing, annoying and generally offputting to her and others when I was a child but also now. This really hurts and I feel, just like IWouldRatherBeWriting, bad about having done all this to my parents. It’s not exactly a useful feeling… If you manage to prevent your daughter from getting it that would probably be much better for both of you.

Initially my mum also seemed to think that there should be some therapy now that would turn me into the daughter she always wanted and she seemed angry with me and the UK healthcare when I told her that this is not going to happen. Now, a couple of weeks later things have got better – she has probably still some hopes that I won’t be able to fulfil but she has come to the conclusion that I’m still the same person that is actually pretty good in quite a few things and got somewhere with this, and maybe not liking to go to parties and discos, not caring about looking “pretty” or fitting in and not playing nicely with barbies wasn’t such a bad thing after all. Perhaps with time you can see this diagnosis as a help to understand your daughter and why she is different from other kids (or grownups later). Things you have been struggling with so far may well become less of a problem for you and the rest of the family (and therefore also for your daughter) because you know now why it’s happening and that nobody is to be blamed for it. Constantly trying to change her with no success must be pretty frustrating for both of you – being forced to review your own expectations may actually lead to everyone getting more relaxed and happier as a result. You may also get some useful advice how to manage challenging situations where perhaps your reaction so far was doing the opposite because you simply didn’t know better. Please give it a bit of time, try to see it as an explanation rather than a verdict and as an asset in quite a few ways rather than a general handicap, and make sure your daughter knows that she is the most awesome little girl to you (keep in mind that other kids aren’t all that awesome all the time either, even if their mums can’t stop announcing exactly that on Facebook etc. and equally you are still an awesome mum if you sometimes struggle to cope with the way your daughter behaves).

Perhaps that’s just a language thing but I think you can’t “plan a baby”. You can plan having one but the rest is going to be a surprise. And it would be horrible if all people were the same, wouldn’t it? There will be challenges ahead for both your daughter and you but if you are proud of her (I’m sure there are things to be proud of), accept her the way she is and help her in an understanding way to deal with problems you’ll give her a very good chance to live a happy life.

My parents say they don't put expectations on me. It's more me looking around and seeing everyone else's perfect kids, people my age, who are doing life so much better than I am. I'm ugly and defective. My parents are amazing. It's not their fault. I just wish I could have been a better daughter for them.

I feel very sad that you feel responsible for not being able to fulfil your parents' expectations.  My dad was clear about his expectations of me (not in regards to autism/disability, but in connection to another aspect of myself).  There is no way on this earth that I could have lived out his fantasy for me and so I am unable to have a relationship with him.  I think having expectations to the extent of believing they will inevitably be fulfilled and putting a child under pressure to live out those expectations is not fair on the child.  I do not (well, very occasionally I do, but rather I will not allow myself to) feel bad that I could not meet my dad's expectations.  I have to live the best way that I can and I am not responsible for his disappointment.  As I said, I feel sad that you (and other people) feel responsible for their parents' expectations, particularly when this just is not possible.

I've got Asperger's, curious, and I think she's fair enough. She's right that nobody plans this for their child, and it's not what you plan when you become a parent. I hate myself for what I've done to my parents by being autistic. They deserved a perfect little girl and they got me. 

I think Ferret had far more of a "blaming attitude," referring to the original poster as "abusive," but that's just my opinion. I actually thought your response was perfectly OK, whilst being honest, and that's what we want here.

I tried to be balanced and I did actually limit the full expression of my response to the issues raised. In my reply I recognised it's a difficult time and trying to be constructive in suggestions for the future, but also that a kind of blaming attitude ("you *make* me feel") isn't ok and that finding a way to think more positively rather than wishing it were not true is going to be important.  Not a good opening sentence, perhaps, but ultimately one I stand by.

I think that perhaps some parents come here in a state of distress and maybe don't anticipate a direct, honest, genuinely held opinion from autistic people.  Maybe they assume it's all (NT) parents here who will identify with a perspective of tragedy and loss of dreams.

No worries, I was just like...what did I do wrong? Lol

Am I overreacting here? (Meaning my earlier responses to this) I'm particularly angry at Ferret. Ferret had no right to say what he did about being "abusive;" I just thought that was despicable.

Oops!

I wasn't aiming any criticism at you, iwrbw. We were both writing posts at the same time and I only saw your post after I posted mine.

recombinantsocks said:

I agree with some elements of all of the contributors on this thread. Everyone has a point that needs to be made but it is not always easy for us to be successfully persuasive in putting those views across.

What was wrong with how I put my point across? I said what I meant...I will not see somebody bullied for no reason on an online forum.

CantBelieveIAmHere said:

the only way she'll grow out of her problems is with encouragement.

There is much truth in this. Children with autism can thrive if they are encouraged. They will not do well if they are disciplined and discouraged. It is important to separate her 'problems' from her autism. Autism often leads to real problems such as anxiety and worse but autism, in and of itself, isn't necessarily a problem. It does mean a deficit in one area but it means nothing about her other abilities. If she can succeed at some things then it really doesn't matter if she fails at another. Everybody (I mean everybody in the whole world) has talents in some areas but deficits in others. I was listening to Richard Branson on the radio saying that his dyslexia did not stop him getting where he is today. Chris Packham did not let his autism stop him getting where he is today.

Any parent with an child who has autism needs to learn how to do "positive reinforcement" focus on encouragement and do not get sidetracked by the things that cannot be fixed. She will never have the innate and intuitive diplomacy and social skill of the silver tongued diplomat but that just cannot matter. She can learn the rules of social life, etiquette and manners but she will still be prone to miss the signs and expressions that belie another persons inner thoughts and feelings. If she ends up in a school where bullying is allowed to flourish then you should remove her from that school and find another school with a better culture. Do not fall into the trap of bullying her yourself.

If this issue has not been spotted before now then she will have had a number of years to become brutalised and mal-conditioned by others' reactions to her innocent behavioural traits. This needs to be recognised and unpicked carefully and thoughtfully.

I agree with some elements of all of the contributors on this thread. Everyone has a point that needs to be made but it is not always easy for us to be successfully persuasive in putting those views across.

I came back to this when I got up this morning as I was kind of upset by the reactions the original poster got. We are supposed to be being supportive on here, rather than attacking people.

Curious - maybe you're right that it isn't fair to say someone "makes" you feel like a bad mother, but to be honest, I would have reacted that way to Ferret's extremely judgemental post. As far as I'm concerned, people need to either be compassionate or not comment at all.

Ferret, I think you are being much too hard on this lady. I think you need to show some more compassion. She has just had some overwhelming news; she's bound to be upset, for her daughter and for herself and the rest of her family. Calling people "abusive" is unfair. How can you judge somebody's parenting abilities from a couple of brief (and understandably quite emotional) posts on a forum???

Can'tBelieveIAmHere...I understand how you feel. I was diagnosed Asperger's over four years ago and I still find myself mourning the life I will never have. It does feel like a curse, if I'm honest, but there are still things I can do, such as my writing and my more occasional singing. I know other people on the spectrum who have good jobs, partners and friends and families, and happy, fulfilling lives. I'm sure your daughter has her own skills; if you encourage these, then this will boost her confidence and help with her socialising. I am with you that socialising is important...at the end of the day, we all have to do it, autistic or not, and whether we want to or not. Obviously you have to know when you're pushing too hard...now you've got the diagnosis, you might be able to achieve some balance here.

I have no doubt that you love your little girl for who she is. It sounds like you're just reeling with the shock of it all at the moment, and that's OK. Please don't be put off by harsh reactions of other posters...we are here for you.

well said.