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Wright stuff-autism

22 replies

wooga · 27/04/2010 09:24

ch 5 now

OP posts:
wooga · 27/04/2010 09:25

Jodi Picoult discussed her book and her cousin with autism,they're talking more about it at 10.

OP posts:
PinkoLiberal · 27/04/2010 10:04

I emailed this in

Dear Matthew

I am writing with regards to the autism article

I have 2 children diagnosed with ASD and am halfway through the taught element of an MA in the subject; both my children are so called High Functioning. All that means is an IQ over 60 when tested. Asperger's is IQ over 100 without spoken language delays, HFA over 60 with language delays, classic autism spoken language delays and low IQ.

Can it be a blessing?

Well they are to me obviously! I adore them. But both children are so different
The younger has a high IQ so is defined as HFA but has a low functional ability nonetheless so has to attend a special unit, won't get married or likely have a job. he may not even ever be independent enough to shop alone.

Certainly anything but a blessing to a very loving child who would love to be a daddy one day.

My older child has Asperger's. Sometimes he is lovely, a joy then when he overloads he becomes very aggressive. He hates the constant bullying and feeling different. His IQ is high but as he has to learn in a large class he doesn't achieve anything like his capability. He needs constant supervision at school in unstructured scenarios, and may go to a specialist class at 11.

Something like 80% of people with Asperger's fail to establish themselves in a long term career and leave home for independence. That's anything but a boonus and whilst the younger won't quite grasp his differences, the older will totally and feels alienated and a problem to society. He is also in the system for eating disorder therapy at ten.

There are highs- my younger is adored as a playmate at school, and the older has potential but he probably won't reach it because there isn't the support needed for that: when around 1% of people have ASD (Nastional Autistic Society figures) it would need a massive funding input the country cannot afford to make that work.

Is autism a bonus to me as a parent? Well my boys are clearly but as a graduate who cannot work as a carer and spends her time at appointments, trying to modify behaviours, being hit, and attempting to build them a future not really. Children with Asperger's don't qualify in our area for Social Services support or respite so this is probably our life now until we die, as carers. Possibly with no days off at all once my parents get old.

And this believe me is the high functioning end. People with HFA / Aspergers can lead good full lives but only when the support is there and the person doesn';t have additional needs: people with autism often have ADHD, OCD, depression as well- all common co-morbids. It's very complex indeed.

I love my children but if having a legs removed would cure them tomorrow
i'll start the nil by mouth now, and I know my husband feels the same. Would I if I knew the elder had a guarantee of employment support at 18 and an occasional day off? Probably not. But that's not going to happen, sadly. And as welll as my husband and I struggling, and the elder (the younger is a teddy bear, happy and cheerufl- a dream) their other sibling also does. I am trying to set up a sibling support group because there's nothing else here for him, it's not ideal though.

And why email not phone? Because I have traits myself and a phone phobia. After a lifetime of being a bully magnet and being lonely- not a blessing. At all.
Thanks

thederkinsdame · 27/04/2010 10:54

Pinko - what a fabulous e-mail. It really does explain what it is like as a parent of a child with HFA and our fears for the future.

niminypiminy · 27/04/2010 10:58

Pinko that brought a lump to my throat.

MrsYamada · 27/04/2010 11:08

Spot-on Pinko.

bdaonion · 27/04/2010 16:12

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

PinkoLiberal · 27/04/2010 16:20

Unusually for that show which I often watch in a state of I thought they handled a difficult topic really well.

I will get that Picoult book; I used to read her a lot but the dilemmas were never quite in depth enough for me. But then I have a degree that includes philosophy PMSL; she'd have to be a genius to mange it

aokay · 27/04/2010 16:59

actually felt very fed up with Picoult's handling of this as she says, she does'nt have an autistic child but.........I have an autistic child and it is anything but a blessing. I worry myself sick about her, I'm sad for her as she finds life too complicated and suffers massive anxiety problems, she will never have anything in any way approximating a 'normal' lfe - so go on, all you parents who think its somehow 'sweet' to be disabled and explain to her what a blessing it is.....personally my marriage broke up over the strain and I've lost countless friends who inch away due to what they see as 'difficult' beheviour from your child.

PinkoLiberal · 27/04/2010 17:03

aokay did you read my post then?

It is the most useful I ever seen MAtthew Wright be on screen, and I thought the real voices that spoke were good. emotive and he treated them with value.

if you didn't I am sorry but that is how I certainly felt about it. I expected a whitewash / a few throw ins about amde up disability / maybe somoene blathering on about how it's a shame itc an't be tested for

that's not what I heard at vall; I heard acceptance by the tresenter at elast that it sin't a given that it's the sort of easy lot some neurotypical campaigners would like uss to beleive at all, but a hard and bumpy ride

TotalChaos · 27/04/2010 17:05

there's a review of the Jodi Picoult book on this blog:-

bookwitch.wordpress.com/2010/04/12/jodi-picoult-and-autism/

smallwhitecat · 27/04/2010 17:21

This reply has been deleted

Message withdrawn

PinkoLiberal · 27/04/2010 17:58

I kknow swc

An I have always attracted bullies- at school, Univeristy.... even Dh comments on that, doesn't amtetr what I do, if soemone needs a target it's me they aim at

I ahd a convo with a good friend from school the otehr day and she apologised for not intervening when teachers bullied me. TBH I didnt even pick up on it I was that used to it! I knew two did, apaprently they were having an affair and I upset one so the other got involved (threy made me do stupid things like parade over the stage in assembly to demonstrate what scrufffy looked like), another gave a lecture on cretins using me as an example when I was off sick but the one friend was saying about- over my head

Which I guess is why I was bullied: didnt pick up on it early enough to react or defend myself so it was too established when i realised IYSWIM

PinkoLiberal · 27/04/2010 17:59

Sorry about typing- ds4 having a grizzly day as his Dad went to BArry Island () with his colleague students from Uni PMSL and the routine change has thrown him.

BigWeeHag · 27/04/2010 18:09

Great email, Pinko.

What is your masters in, if you don't mind me asking? I am looking for something to do while I'm at home, I've decided not to look for a new job until DS1 is settled at school/ not having so many appointments and I'm not spending so much time on the phone to idiots various departments. I was considering Educational Psychology, or else an MA in education focusing on inclusion.

Also, regarding traits of your own - my brother and I are both similar, loads of sensory issues (I am very tactile defensive and have very actute hearing) and social... erm... difficulties is probably the most tactful way to say it! I think if DS1 hadn't had the speech delay, then we would have just thought he was one of us.

PinkoLiberal · 27/04/2010 18:18

BWH

Staright MA in autism; part time so I can fit aorund boys (and so Ic an afford it- FT would be £9k!)

It's good: struggled at first as we ahd a few social workers etc who didnt seem to wnat to be there and kept referring to people with ASD as 'those people' etc, but now the group has shrunk it's lovely.

HAve done Management and diagnossi modules, am doing aetiology and research modules next year.

PinkoLiberal · 27/04/2010 18:19

' I think if DS1 hadn't had the speech delay, then we would have just thought he was one of us

DH ash obvious if undiagnosed dyslexia, MIL OCD, Me traits if nto full blown AS, Mum the same, Grandad and Uncle bloody obvious AS....

my boys were stuffed, frankly

BigWeeHag · 27/04/2010 18:26

Sounds brilliant! I really want to do the Ed Psych, but it's 7 years and another UG degree, then a doctorate! Maybe a wee bit ambitious at this time.

It's interesting that the definition of HFA is an IQ of over 60, that is a really wide swathe of people.

PinkoLiberal · 27/04/2010 18:28

I know, but 60 is the criteria for proper LD

Birmingham do some great distance SN courses you know- worth a look

BigWeeHag · 27/04/2010 18:29

Ooh, thanks x

PinkoLiberal · 27/04/2010 18:32

Wherabouts are you 9roughly) BWH?

BigWeeHag · 27/04/2010 19:01

Northern Ireland. I am resigned to distance learning though!

PinkoLiberal · 27/04/2010 19:04

Distance would be perfect then LOL

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