Neurodiversity Thread


#41

favourite lines from diagnostic reports?

mine was that I ‘have trouble recognising happiness’


#42

This sounds silly but how do you go about getting a diagnosis? Do you ask your GP?


#43

I am going to have to try find mine, but I don’t think I have anything as good as that!


#44

"Can pick up on cues from others when they are losing interest but will often carry on anyway if she wants to talk about her topic of interest. " :joy: #truethough


#45

yeah, you go to your GP and they refer you for an assessment, in the past this used to be really patchy, but since the autism act there has to be a pathway to diagnosis everywhere, however waiting lists can be quite long


#46

Not silly at all! I don’t know what the standard process is, if there is one. For me it happened when I was already under the mental health services, a psychologist asked my mum quite casually if I had been assessed for aspergers when I eas a child and that sowed a sees, I did some research and realised it made a lot of sense that I might be autistic, then after a lot of cajoling next time I saw the psychologist I got them to refer me for diagnosis. My local MH trust has a specific aspergers service (who are amazing) and they saw me informally first and then put me on the year long wait list for an assessment, butblet me access their services straight away because it was clear to them without the official process already.


#47

It’s okay, no offence taken :slight_smile:

So - we received our official ASD diagnosis for our eldest over the summer. It wasn’t really a surprise: we and the school have been managing her as if she’s autistic for the past three years or so. For background, she was originally diagnosed with developmental verbal dyspraxia when she was 3: she didn’t speak at all til she was 2 and then only used a very limited number of sounds. She had speech therapy, which was amazing, and now you’d barely know that she’d had a problem.

Her main issues have been:

  • management of meltdowns;
  • anxiety;
  • getting over-excited / overstimulated about things (e.g. she is incredibly excited at Christmas and is obsessing over things, such as when we’re going to get the Sufjan boxset down from the loft!)

The school have been generally really supportive - they have applied the “reasonable adjustment” rule to allow her grace for situations that would have got other children excluded.

I’ve been struggling recently with how so many close friends / relatives just don’t get it. Examples:

  • my Dad was talking about his new friend who’s an OT and works with autistic children. But (in his words) “kids with real problems” - as if to say that my daughter doesn’t struggle with stuff and her problems are trivial;
  • countless people saying “oh, all kids are a bit like that / do stuff like that / lose their temper”…
  • when I express worry concern about her, people saying “oh, but she’s lovely” - yes, she is lovely. I love her as fiercely as I can imagine loving someone. But it doesn’t mean that she doesn’t struggle, and it doesn’t mean that we don’t find it hard as parents.
  • we’ve actually been properly unfriended by someone whose daughter was in the same baby/toddler group as our eldest, as she didn’t want her daughter hanging around with ours :frowning:
  • this year we’ve asked to go to Mrs CCB’s parents’ house for Christmas, but we’ve asked if we can be the only family to stay there. Reason being is that it’s quite a small house and that if everyone comes then there’ll be 15 people in the house on Christmas day, which is way too much stimulation for her, at a time that’s already overstimulating. Anyway, Mrs CCB’s sister (who goes down to their parents’ most Christmasses) has got in a huff with us for doing so, and Mrs CCB’s mum has, well, not quite taken her side but keeps fussing about it. Ugh.

It’s frustrating because I’m not talking about people who have only met her once or twice: I’m talking about close family members and close friends who still don’t really understand. I feel like maybe I should be doing more to pull them up on it, but it gets exhausting after a while.

Anyway. She’s an absolutely adorable girl - she’s incredibly bright, comes up with some incredible descriptions for the way she sees the world, has a cheeky sense of humour and a big smile and is just great. On the positive side of things, I’m glad that all of this has been identified in childhood so hopefully we should be in a better position to keep advocating for her and help her access the support she needs.


#48

I am very sensitive to certain smells. Cigarette smoke and air fresheners make me feel really sick, especially those ones in taxis.


#49

Mr Bracket, I have nothing to offer in terms of help or advice but wanted to say that you and Mrs CCB sound like fucking brilliant parents! :+1:


#50

That first view from your dad (or his mate?) is quite frustrating. in the autism literature I’ve read it is a common concept that there isn’t a direct correlation between level of impairment and suffering, higher functioning types have to use a lot of mental resources to compensate for the instincts they lack while managing overstimulation, and are constantly judged for it, it’s exhausting

I remember once being out with some people I didn’t know that well and the subject came up, they said there are too many autism diagnosises these days, it was rubbish kids are just being kids, another guy said something about how we are all individuals and shouldn’t label people. I was annoyed but not quick thinking enough but have often thought what I would say if it came up again, something like they are wrong, kids with asd will lag behind socially, be judged by their peers, internalise it as them being at fault, develop anxiety and mental health problems, and eventually will reach the point of autistic burnout in later life (that is a common path for adult diagnosis).

I sometimes feel like an imposter, I have a diagnosis but sometimes wonder whether I should have, I can work and live independently, have a few pals, I have to remind myself it is with me in every interaction, causes me stress on a daily basis and, have massive identity problems and can only interact with people via a persona that is only a sliver of what I really am like, never had a relationship, never made friends at uni, it has impacted me massively but I still feel like maybe I shouldn’t have a diagnosis.

Sorry if this is about gloomy focussing on the negative aspects, I’m sure as your daughter has been diagnosed early she will avoid these problems but that’s why people taking it seriously and having the right support is so important


#51

Thank you, I don’t always feel that way (who does?) but I appreciate you saying!


#52

Yeah I know… I remember (years ago) some friends of mine criticising some other parents for taking their child for an autism diagnosis, implying that it was the parenting that was at fault. I also remember talking to someone (a teacher, no less) who didn’t think ASD actually existed :thinking: … stuff like that stays in your head and you end up thinking “have I made my daughter autistic?” which is obviously bollocks.

I think that even the idea of an autistic “spectrum” can be unhelpful (even if unintentionally so) - it’s less linear than that, and affects different people in different ways.

^this is actually really helpful, I might steal this wording if that’s okay? This describes my daughter quite well. As Christmas or other family gatherings she’ll be fine for a while being downstairs, being around her cousins but then she also needs somewhere to retreat with a pile of books for a couple of hours afterwards. And we try to do things like going for Sunday afternoon walks to help her unwind.


#53

In addition to what I posted in the other thread yesterday, having dyspraxia I’ve found as an adult the biggest problems have been with organizing myself. However I’ve found the best solution to combating my disorganization and confusion has been to write lots of lists and plan everything I do in great detail. This goes just for day-to-day stuff like work and shopping, to going travelling. Probably pretty obvious but it’s really helped me. Only draw-back has been that my house is absolutely full of old lists and notepads


#54

think that teacher should face some kind of disciplinary action, as there is no way they will be treating kids fairly


#55

I also had real problems learning to drive. It took me nearly a decade on/off. I passed in the end though after about five attempts.


#56

I’m really disorganised too, always thought it was a strange contradiction because the stuff I’m strongest at involves being very methodical/meticulous which I would have thought goes hand in hand with being organised, and enjoying organising stuff is a trait of asd, but I am probably as disorganised as it’s possible to be, now I think it’s down to impaired executive function which is also part of asd, weird how with asd behaviour can be polar opposites but always tends towards extremes.

I also make lists to help keep organised, smart phone apps are pretty good for this


#57

Hey man, sorry for my ignorance, but I previously presumed that the idea of a “spectrum” was to try and individualise it as much as possible…but I’m guessing this isn’t true in a practical sense?


#58

Yes, I really need to be methodical at work. I think to an outside observer I’d look pretty chaotic but I usually have everything under control


#59

Hi PM.
Great thread.

I have hypersensitivity with too many triggers that are making me feel funny just thinking about so i’m not going to write them down today.

There are a lot of things i’ve realised I do because of stuff growing up. One of my things is taking a shower. I can’t take a long shower because I am so used to being shouted at as a kid whenever I got in the shower to hurry up. Sometimes I hadn’t even stepped in there before my dad would bang on the door to tell me to get out of the shower so now I am automatically programmed to take the quickest shower possible. People think I don’t wash properly :frowning:


#60

Ah no, it wasn’t a dig at you and I can totally understand where you’re coming from in terms of individualising it and so on - and even the NAS describes it as a spectrum condition. I guess it’s not just a simple straight line: if you imagine various parts of an autistic person’s character mapped out as marks on a star / spider diagram, then each person has a different make-up.

The reason I highlighted it is because I guess my daughter can present, for a while, as neurotypical (albeit rather lively). She’s verbal, she’s not been one for stimming, she can hold a polite initial conversation (though her choice of words is quite quirky: she’ll go bounding up to someone she’s never met, say “good morning, young man!” and shake them by the hand!). So if it was a straight line, she’d probably be marked on the milder end of the spectrum, based on her ability to function / blend in - when it’s actually a huge effort for her.

Anyway, bottom line: no offence taken :slight_smile: