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adults with ASD - do you wish that you had been dx-ed?(9 Posts)
If there are any adults with ASDs reading this - could you tell me if you think that it is good to get a dx or bad to be labeled please? I think that the dx is better but would like other opinions as I keep wonderign whether we should be trying to get dd a dx or should we try to "cover up" as much as possible?
If your child has needs, I can't seen any good in covering anything up. It's not fair on her. We're not living in 1950s middle England.
Both my boys have autism diagnoses and my mum sees a lot of parallels between my youngest and me at the same age. Nobody batted an eyelid back in the early 70s, though. My mum was told I was probably "backward" because of my speech delay and the way I ignored people and she was pretty much expected to move on and deal with it.
If I was a pre-schooler now, I'd almost definitely have ended up with some sort of ASD related diagnosis. Fortunately for me, I had the personality to put my head down and work through my own isolation, since all I cared about was pleasing adults and being the cleverest kid in the class. My brother didn't have that luxury and ended up having to work through some seriously heavy issues in early adulthood.
I'm not sure if I "have ASD" (definitions are so dodgy) but DS2 and I clearly both have some issues that are a bit spectrummy.
One thing that's brilliant is to learn that some of the things that are "a bit wierd" about me are things that have names and are known about! The most obvious example is that I've learnt that I have something called "Face blindness" - I am very poor at recognising faces and probably use the "wrong" bit of my brain to do it. The bit of my brain that ought to be doing faces appears to be occupied memorising and endlessly replaying all the different parts of long symphonies (and no I wouldn't swap [smile[). Face blindness is common in people with autism.
As a teenager though I think I would have romanticised any diagnosis and made excuses for myself - I had to learn to live in this world ultimately. And now I'm nearly 40 which is hopefully an age for getting over self-scrutiny rather than revelling in it so I wouldn't do it now - I've learnt to compensate for all my differences.
So I think that getting a clear profile of your dd's individual needs is the goal. If in order to do that you have to get a dx then so be it. She will achieve more if her needs are understood. Having said that, I have declined dx for my DS2 because I think that (a) he doesn't have autism as defined by Greenspan and (b) knowing that he has receptive language delay and sensory issues tells the teachers all they need to know - adding on that he "has ASD" would add nothing to their knowledge (he has no behavioural issues so isn't considered naughty).
About all, avoid any course of action that could result in a sense of shame in you or your daughter about her differences. My brother has a similar story to tell from that of the previous poster .
I am very similar to dd (and also have really bad face blindness) but see it very much as being different to most people not having a disorder (simply an uncommon and in many ways positive condition). I am struggling a little with explaining things to very bright dd (who is well aware that psycologists often see disordered people etc) but I do think that my life would have been easier if I'd been diagnosed (rather than being classed as very able but too lazy to spell or be neat and organised; very hard and cold personality wise and rude and disrespectful to adults). We started the process after dd was pulled out of class by a teacher for answering back and being cheecky when we could see that dd was just trying to be helpful (by pointing out the teacher's shortcomings ) and the school just would not accept that it was not delibatate rudeness. dh (with similar traits) was nearly expelled for "constant cheek" and I don't want dd to go the same way but am constantly concerened that labels are bad etc.
Well, let's drill down a bit on the labels are bad thing.
I guess there are two bad things about an ASD label
Firstly, there is a lot of prejudice and there are a lot of negative assumptions about anything related to autism (chiefly that your ability to form loving relationships is permanently compromised)
Secondly, there is a tendency to assume that people with ASD are more alike than different and that observations made about the one person with ASD you have met will apply to the next person (teachers seem to quite often be guilty of this).
So you will have to live with those two things and will probably end up semi-campaigning to help others understand better.
But on the other hand, if your daughter may take many years to understand the rules of social etiquette (presumably you have books to help her work on these so you have some idea of how quickly she is capable of improving on this?) then like you she is at risk of getting those equally negative labels like the ones you described.
well I may have got an AS dx had I been at school today, and did get an OCD Dx when I was 18. The OCD Dx helped; instead of thinking that I felt certain ways because I was bad, or stressed about tiny things because I was bad (I was obsessively conscientious at times as a teen) it was a great relief to understand there was a reason for how I felt, and I wasn't alone. In some ways I wish I had at least been referred for an assessment for AS; as then my social needs would have been acknowledged - I was desperately unhappy as a teen, lonely and struggled to make any friends at school - support from school/professionals could have made a difference. As I achieved academically and was well-behaved (unnaturally so....) it was very easy to overlook my welfare.
In an ideal world I would say - as long as your DD's needs are catered for and she is properly supported by the school, let her decide for herself about an official dx - however given the difficulties re"resources etc, I would consider getting a DX very seriously. I wouldn't "cover-up" at all.
I have an assessment booked for next month but am not sure if it's a good idea especially as there's no support available.
There's the big risk that dh and other family members will start to blame me for ds's autism on difficult days.
I had a slightly difficult childhood. I always managed to turn my whole class against me to the extent that I stopped attending classes at two different boarding schools. I never understood subtlety and apparently, at the age of 11, I admitted to a 'close friend' who questioned me using a lot of metaphor that I had been sleeping with a teacher, got pregnant for him and had an abortion in the toilet using a coat hanger. I remember all our conversations and neither the event nor the admission ever happened. It was a primitive boarding school so I was usually beaten, spat on and called very bad names by the other girls. i changed schools which helped a bit but my new classmates still found me rude. I was punished very often by teachers for reasons i never understood and eventually limited my routine from my dorm to the library and back.
Work was slightly better especially when I worked as an analyst with 12 blokes. They didn't care about Now, I have a lot of issues around 'soft skills' which, according to my boss is the greatest challenge for him.he said to my coach that I'm too blunt and literal for most people. my 360 degree appraisal had
'...there seems to be a human element missing'
'..need to stop assuming that everyone knows what you know'
'...other people don't get it so you need to be patient'
there were also positive comments but we have been trying to get to the bottom of the feedback for about a year now and I'm still said to be 'very honest but the problem is that most people are not used to that level of honesty'
There are times I think a diagnosis helps because i have been so stressed out with trying to be softer and nicer and would feel better knowing that the 'hole in my brain' (which I concluded I had at the age of 13) has a name. On the other hand, if I declare a disability it's goodbye deputy director promotion.
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