why am I angry

[drivemecrazy63]

Im feeling angry but perhaps I shouldnt a old friend came to visit me the other day I had previously told her about DS being Dx as ASD and that hes at a SS she had met him before when he was a toddler , but when I didnt know his Dx I would often make excuses for his behaviour which was is challenging at times. He was well behaved when she visited which does not happen with visitors that often as the disruption upsets him but on this day he was playing nicely on his computer and being pretty quiet. we chatted and had a coffee and she was telling me all about her nephew who is autistic and what hes like and how much worse than my DS he is (he sounded like classic autism as couldnt speak and the other extreme traits ect) I became really wound up the further into the conversation as she continually refered to her nephew whos an adult living in a home now as he was so hard to controll and cant communicate , she repeatedly kept asking but are you sure hes Autistic aggghhh i tried to explain how hard getting a DX is and it took me years not because hes not very mildly Autistic but because of bureaucrats and red tape and money basically ect but she wouldnt have it she thinks its something else because she knows what someone whos Autictics like. My DS goes to a SS hes moderate ASD and Dyspraxic with a pinch or two of ADHD thrown in for good measure and just because he was fairly quiet (engrossed in a new game hes fixated with atm) she thinks hes fine she has never seen him in a meltdown or getting dressed and teeth brushed in the morning or panic about a change in routine i really tried hard to explain about the spectrum but she seemed closed to that idea a lot of people just know about clasic Autism and savantism which she said he was too and dont realise the huge differences the spectrum encompasses , I know I know I should not let people wind me up and im sure she means well but we have to struggle to get recognition and it would be nice if we didnt have to continually explain everything maybe I should have given her one of my books to read about it but it really made me feel deflated by the time she left.

Yep, that would have driven me crazy too. Diagnoses aren't handed out like free leaflets - it takes SO long to get them.

Trouble is, so many people really do think autism is exactly the same thing as a learning disability combined with speech/language difficulties and really challenging behaviour. All three of those things are nothing to do with autism itself. there might be autism as well, but it's not a learning disability, it's not a lack of speech/language and it's not bad behaviour (though people can become badly behaved if they are mistreated or misunderstood etc).

Autism, as we both know, is three things - extreme need to be able to predict what's about to happen, extreme social clumsiness (which we can improve over many decades), and often sensory behaviours (very sensitive/undersensitive to sensory stuff). People can have a severe level of autism and be able to speak and act 'normally', because we learn to disguise it. Same as someone who's blind can appear perfectly normal until asked to describe what they're looking at.

thats right amberlight I wish you had been round to give her a talking too nobody knows and can explain as well as you do yourself reading your posts has helped me probably the most as a real insight into how DS possibly feels and reacts the way he does, but I can still hear her now "are you sure " of course im bloody sure im totally sure I wanted to scream at her weve spent the last 6 years wasting time because of the NHS and LA and now hes at SS im deffinately sure they wouldnt give him a place at a social and communications special school if he was just naughty if thats what she was thinking , shes a lovely lady in her late 60s perhaps because it was not recognised in the same way back then in her day I dont know but It made me so frustrated , this nephew she sees about once or twice a year who she really does not know that well, but she did say he was fantastic at maths and making things with wood which is wonderful but atm ive not found anything DS does particularly spectacular not everyone does hes generally average in most areas but very good on computer (better than his A* brother was at that age) and has the most fantastic memory now that is fabulous as mines awful (im as Dh calls it gettin old timers a memory like a colander me) he remembers films and programmes word for word after one viewing.

There is just so much misunderstanding about ASD isn't there. People have met someone whose cousin's son's schoolfriend knows someone with autism, and they are suddenly an expert on it. Well, perhaps she thought she was making you feel better by implying he seemed normal

My mum still refers to it as a learning disability (ds has none). And 'bad behaviour' is also often bandied about by those who should damn well know better in my family

Amber how perfectly put.

(not bad thanks - only two more lots of chemotherapy potion to go then surgery then a year of the wonderdrug thingy but I'm still cheerful and it's working so hurrah! )

That's great news Amberlight, whoo hoo.

its ok amberlight so glad it seems to be working ..its all time consuming telling people everyday isnt it as my DS says dont you ever stop talking you grown ups blah blah blah cheeky he talks for britain himself as long as it is about a subject he loves like jack sparrow, star wars , lego but I guess he has had worse interests he was obsessed with thankfully over now (phew)

Yay for Amber's good news

Sounds like a well-intentioned way to try and empathise with you, driveme! "Oh, don't feel bad, such-and-such is so much worse off than you"

Oh, and it sounds like she needs to jog on and nosy into her nephew's care if he's aggressive and apparently non-communicative - just because he's not speaking English doesn't mean he's not trying to tell people stuff

Jack Sparrow, star wars and lego? My favourite things!!!!!

Wishing you all the best Amber and a good recorvery.