To be angry that this went unnoticed for so long?

(14 Posts)
MusingsOfDanaScully Sun 20-Jul-14 22:27:17

I actually already know I'm being unreasonable because I know it wasn't done on purpose and I know it wasn't anybody's fault, but that still doesn't change the way I feel or stop me from being upset.

About two weeks ago I was diagnosed with Asperger's syndrome. I'm 23 so I guess I am older than average to get a diagnosis although I know there are people who don't get diagnosed until much older. I'm actually quite relieved about that which probably sounds crazy to some people but it explains so much and I'm glad that there is a reason for the way I am and I'm not just a freak or a failure who simply needs to try harder.

However I do feel angry, upset and confused (along with relief, I guess I'm feeling a lot of conflicting emotions right now) that I went for so long without anyone noticing. I know females often present differently to males on the spectrum, but the person who assessed me was amazed I hadn't been diagnosed as a child or even as a teenager. My mum was there too (she had to give an account as to what I was like as a toddler/young child) and based on her account and from my account based on what I can remember from my childhood, I was pretty much a typical textbook child with ASD up until the age of six/seven (and I have no idea how to word that, I hope you get what I mean. I'm even bad with words when typing). And truthfully, looking back on my own childhood, he was right, I was.

So now I'm feeling upset and overwhelmed that nobody picked up on this sooner, not my parents, not school, not anyone. I've spent a lot of time just sitting and thinking about my childhood and thinking "how the hell didn't anyone notice there was something wrong?". I hate to bring up the female vs male thing again, but the person doing my assessment did say that even though I was pretty much stereotypically Asperger's as a child, it was probably never brought up because I'm female. I've been reading a lot online and apparently there are still parents having trouble getting their daughters assessed even when it's very obvious they are on the spectrum so I guess it must have been even worse in the mid-late 90's. I'm also an only child so I guess my parents didn't really have anything to compare me to so they couldn't really know something was "wrong".

But when I think about all the crap I had to put up with as a child/teenager for being "weird" and not being "normal" (including from numerous teachers and my family) just makes me even angrier now. I think about all the criticism I got from teachers at parents evenings where they would often list everything that was "wrong" with me wheras now I can look and recognise a lot of those things were because of my ASD, all the criticism I got from my parents and other people...and I just want to scream there was a reason for it and it wasn't my fault. Even now my mum isn't really showing much support. It took a lot of convincing to get her to come to the assessment - she thought it would be a waste of time and seemed to think I was looking for an excuse. Even right after I was diagnosed she turned to me and said "I hope you won't be using this an an excuse not to do things". I haven't seen her since but she has been texting me, usually about how she's been doing some reading on ASD and telling me to read such and such an article on how just because someone has been diagnosed doesn't mean they have it, how it's supposedly the new "trendy, in" thing to have, etc. I just want to scream "really mum, open your fucking eyes!"

Is it really wrong to just want a little bit of support or just to have someone pretend they are supporting you and not just dismissing you?

Yes I know this is very long but I guess I just needed to get that off my chest.

hockeymama Sun 20-Jul-14 22:51:49

wow I can see why you feel so bad and cross to say the least. I work in a primary school and it is very tricky because of the fact that Aspergers is a spectrum and therefore people are affected in such a wide variety and degrees of ways. Mum- hopefully time will let her see you are still you and she wasn't to blame for you being Aspergers. Maybe that is why she is not being supportive yet. She might be thinking she did something wrong or be guilty because she didn't spot it. It is only in the last 10 years or so that AS has come to the forefront and more widely known and understood but even now I think that's mostly by people who are not long out of education so may have experience of meeting those with it at school. At least she is doing some reading on it....why don't you make a move by getting her a book on AS from the library or Amazon? I think you could do with support with other young people who have gone through it too...online or a group who support each other. Also, you need the angry and let down feeling just now..it will help you come to terms. However make it work towards your future and write down the questions you have so you can prioritise and find the answers for them. You are still you but now you can be empowered into knowing what your strengths are to focus on them and know your sore points or weaknesses and try to master or avoid them.
Good luck, a spectrum can be a beautiful thing and I am sure your positive qualities can now be explored to a greater degree.

DoJo Sun 20-Jul-14 23:08:36

I think you have your answer in your OP - your mum didn't want to see, didn't want to accept that you were different in a way that wasn't just a facet of 'normal' behaviour and she thought that you should have control over the aspects of your personality that are informed by your AS. It's likely that the denial she had then has turned into guilt now that you have a diagnosis, and her knee-jerk reaction is to resume her original position that there might still be nothing 'wrong' with you and that she didn't overlook/ignore/fail to address what probably now seem like fairly serious behavioural indicators.

She may well feel as though she has failed you, as though she didn't do enough and you have suffered as a result, and wants to push those feelings away by convincing herself and you that there really isn't anything 'wrong' with you now.

In some ways, perhaps your acceptance of the diagnosis and relief at finally having your 'weirdness' vindicated has made her feel worse, as though she was the last person to know and that you could see you were different so why couldn't she.

Either way, I think you might need to give her some time to come to terms with your news. It may be a relief for you, but it would take a parent with a heart of stone not to feel guilty, to relive every time they told you off for something that now transpires was a result of your AS, that they didn't seek the kind of intervention which could have helped you earlier, in your formative years. Perhaps your mother will never accept it, and to maintain a relationship with her you might have to accept that, or she might need you to tell her that you don't blame her - would you be able to do that?

It's not surprising that you both have strong feelings about this, and in an ideal world she would put yours ahead of her own, but time may make this all seem more manageable and help you both to reach some peace with the situation. Good luck - it sounds like you might both have some soul searching to do.

Tinted Sun 20-Jul-14 23:49:45

Would you like to ask MN to move your post over here maybe, or link it, www.mumsnet.com/Talk/special_needs_chat I think you'll get more responses from people who know what it's like on both sides of your situation.

I'm so sorry, I understand that right now you feel as though your diagnosis would have made a vast difference to your years at school, but perhaps if you read of some of the threads over on SNChat, you will see that's not necessarily how it would have been. Even today, having a diagnosis does not automatically open any doors to help and understanding, nor unfortunately do friends, parents and education professionals suddenly gain the insight they need to "get" you as the wonderful person you are.

Of course it's natural to want support, but you will find that the people you think will be most supportive often are not. The thing is, to be able to understand any SN or spectrum disorder, someone has to have that experience, so you'll probably find more understanding and support on MN SN than from friends and family right now. Here's something to get you started,
www.mumsnet.com/Talk/special_needs_chat/1987301-Support-thread-for-women-who-suspect-or-know-they-have-ASD-traits-or-are-on-the-spectrum

For now, you've been on a huge emotional roller-coaster and now it's stopped you're still reeling from the sensations it's caused. Take some time to come to terms with your diagnosis, work out how it can be used to your advantage, learn when to disclose and when to keep it to yourself.

BackforGood Sun 20-Jul-14 23:59:08

I understand you feel angry at the moment, but, I think you also have to acknowledge all we know about Autism and AS has evolved so much in the last 15 years or so. Asperger's syndrome wasn't even recognised by the World Health Organisation until 1995, and it takes a while for something recognised by specialists to then cascade down to 'general knowledge'. Even now, because of the fact that girls and boys so often present differently, far fewer girls than boys are diagnosed, and those that do get a diagnosis, tend to get it at a much older age.
I hope receiving your diagnosis helps you in the future, even though it's going to be a perfectly normal reaction to be angry at first.

capsium Mon 21-Jul-14 00:11:24

Again I think the lapse is probably partially due to lack of awareness of your condition 20 or so years ago.

What support would you like from your DM? What would help you? Can she/will she help you, bearing in mind there might be lots of small things that make a huge difference? You might have to spell it out for her this does not mean you cannot just that certain circumstances, ways she San approach things, makes stuff easier for you to deal with more successfully.

Just think you have come this far without help and support, that was the worse bit. Now you have meaning as to why you might have found things difficult and will be able to find techniques to manage your difficulties. Your relations might have some catching up to do, but you already are in a better position to deal with the things of life. I wish you all the best.

capsium Mon 21-Jul-14 00:12:32

^can not San, predictive text typo.

OldLadyKnowsSomething Mon 21-Jul-14 00:19:22

I'm sorry you feel so angry, and understand why. But it's not so long since mothers (not fathers) of children on the spectrum were blamed for their dc condition, "frigid mothers", unable to care for/love their dc. Perhaps your mum feels guilty/defensive?

babrow13 Mon 21-Jul-14 00:30:48

Hi

My brother was diagnosed with AS aged about 26, I too feel quite angry that it was never picked up on earlier as I feel things maybe different for him now if he had the right support, I understand how you are feeling. Schools are very good with AS now but when we were growing up in the 90s it was unheard of, especially by our parents. They say there are many people with AS out there who don't even realise, people much older who have lived with it and wouldn't even think about going to a doctor! My mum noticed there was something wrong when my brother was in his 20s, not doing the things the rest of her children did and eventually got him to see a specialist. My brother is different and funny and sometimes annoying, you may find it will take time for people to understand you and the condition but I would recommend you be upfront about it, people are usually quite open. Do what you feel you need to do and concentrate on your positives, you write very well by the way in my opinion! My brother attends an AS support group, it is a very common condition so you might feel better meeting up with others in a similar situation. Best of luck wink

Cailleach Mon 21-Jul-14 01:29:59

" a spectrum can be a beautiful thing": not for me it isn't - it's fucking awful. It has totally ruined my life and my future from here looks pretty bleak.

OP I understand exactly where you are coming from; I was 36 before I was diagnosed.

Looking back, there were so many red flags that I was ASD that I can't believe anyone missed it. It wasn't even the just the ASD that got missed, but also the dyscalculia (top of every set but bottom of maths set?!) and dyspraxia (can't write well, transposes letters, horribly clumsy?!) amongst other many things.

Particularly at fault were the numerous doctors and psychiatrists that I saw in my twenties who totally failed to pick it up, or even ask me the right questions about why I was suicidally depressed.

None of my family have even bothered to ask me if I'm ok or need any support, post-diagnosis. To be honest I think they feel guilty that they didn't spot it sooner, but the issue has been totally swept under the rug and completely ignored. I had to push for formal post-diagnosis support from the NHS for over six months then when it turned up, the guy was so lamentably lazy, sloppy and disinterested in me that I quickly cut contact with them.

No-one seems to really give a tuppenny shit. Apart from The Bloke, who as always has been a star about everything.

So I totally get where you are coming from. Sorry about your mother as well; mine is not quite that bad.

kickassangel Mon 21-Jul-14 01:43:39

Just wanting to post and offer sympathy to people.

I have a DD on the spectrum. I also teach in a school with an exceptionally high number of children who are on the spectrum.

I haven't even told our parents exactly what the diagnosis is as I just can't face the crappy response we'll get.

DD clearly displayed symptoms from age 2 but even doctors didn't pick up in things like speech delay. I realized when she was 3 but was told that she couldn't be diagnosed that young. Now I know that early diagnosis was recommended as long ago as the 1980s.

It is all so frustrating and upsetting. I think that many people are fully justified to get angry. There is also so little support for adults. Again, my sympathies, I wish that they could make up for the crappy response from your mother.

MusingsOfDanaScully Mon 21-Jul-14 10:39:27

I know that there really wasn't much known about Aspergers in the 90's which is also partly why that I feel kind of silly for being angry. I do feel annoyed though that it wasn't even picked up on in my teens and everything was pretty much put down to being my fault and I was told I needed to try harder to be "fit in and be normal".

I just want my mum to stop implying that it's just an excuse and for her to stop sending me "helpful" texts with links to various things saying how it's over diagnosed, etc.

BarbaraManatee Mon 21-Jul-14 11:27:30

I'm 28 & still don't have an official diagnosis. The lists of how it affects females is basically me in written form though so I'm fairly sure I do have it. I also went through a range of emotions when it dawned on me. To begin with I struggled to hold a normal conversation with my mother because I did feel rather let down by every adult I knew as a child who didn't pick up on it. I'm mostly over that now & just feel relieved that I'm not just 'odd' because I've never been able to fit in. It's liberating to know there's a reason for it!

I've only told a couple of people, not including any family members. I know my mum will struggle to accept it & blame herself when she does & I can't deal with anyone else's feelings about it yet. I probably won't tell family until I've started the diagnosis process. It's a year-long wait for referrals in our area & I can't deal with a year of being told I'm 'fine'. I don't blame mum though. She didn't know anything about Aspergers until DNiece was diagnosed about 5 years ago. That's going to be another hurdle for me though, DNiece is very different to me so I'll be told I can't have it because I'm not the same as her. hmm

It's hard & scary when you start to rethink how you see yourself but hopefully it'll be a positive step towards understanding & accepting the way you are! smile

LastTango Mon 21-Jul-14 11:38:13

It took me 11 years, lots of heartache and perseverance to get my son diagnosed back in the 80s/90s. No-one would listen. My son is now 30.

Perhaps your Mum thought you were 'just you', perhaps she didn't want to accept that something was different. She has got a lot to come to terms with........not least that she was 'guilty' of not realising something was amiss.

My friend has persistently ignored the fact that her son is 'different'. He is now 23 and quite clearly there is something amiss. But she does not, or does not want, to see it.

You are right to be relieved, as I was, with a diagnosis. Everything just drops into place at last.

Good luck OP, you will be fine. My son holds down a reasonable job, has a fiance, and is doing well. I wish for you everything you wish for yourself smile

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