I am probably not far from being an ASD specialist- 2 kids with, 1 being diagnosed with, one dissertation away from an MA in Autism.
So probably not unaware.
of course chidlren with ASD- some of them, MANy of them need DLA.
My kids attend special schools; that does not happen if a child's needs can be met by the MS schools and that COSTS
Caring for the boys COSTS- significantly in my potential earnings which as a grad who used to manage a charity branch would be I hope enough to cover bills.
no DLA = no Carer's Allowance.
ds1 needs 1-1 support all his waking hours (so until midnight each day), ds3 is a rare presentation of autism, he is almost the stereotype (as opposed tor elaity) of DS in fact, in your face, huggy, constantly at 100% with a functional age several years behind.
DS4 is quite close to stereotype: screams if given his food with wrapper opened wrong, eats very little etc etc etc (not planning oon claiming DLA for him unless ds1 loses his as for us we are able to cover needs as we are).
Yes of course I don't plan any more.
I can't work- no CM can take the boys as
A) ds1 is violent
B) ther SN taxi drops off the same time as the local schools kick out and the CMs don not come with a magical ability to be in two places at once.
I'd love a job that fits around the schools and will hopefully be back in work when DH is able to work from home in a year and take over chidlcare, but until then our lives and finances have been decimated by disability. I realised today that I have not spoken to another adult in weeks, and won't for a few more; longest period I ever had this was IIRC 10 weeks, just can't get out with boys alone over summer.
Did ahve an interview for researcher post at council last eyar: was half term, DH had a crucial exam and no childcare so-
I would never defend the scrotes that claim DLA wrongly but it's as if DC wants them to thrive- the ATOS tests do not utilise medical history or specialists, they go on a half hour visit: Mr OOh Me Back will fly through, someone with a bit of misplaced dignity ot invisible disbaility will be stuffed! And tehn what? JSA- with compulsory attendance at work aplcement. Can't so that ebcuase of disability- sorry no true you failed ATOS- we are stopping all your benefits for 3 months as penance.....
We in the support community are already seeing this. It will get worse.
There is a huge risk of homelessness and yes even death to the vulnerable people ATOS get wrong. So what did the Government do?
Cancel legal aid for benefit purposes.
Stats last time I checked were that 30% of ATOS decisions were overturned at appeal, 70% plus if a legal advisor or advocate taken along.
At the moment due to ASD we are at risk of losing our home, my marriage to my beloved DH is in crisis through simple exhaustion and lack of ANY time together- he studies FT and runs his own business- and I have had to cancel ds2's beloved sunsidised drum lessons at a huge saving of £125 per eyar (subsidised for all, not low income famillies and if it was we would not qualify, we do not for free emals etc). His drums were therapy for his weak wrists (dyspraxia), it's no biggie when next thing to stop is heating but still makes me feel like shit.
Autism is a bastard: it wrecks lives and affects anyone, DH and I were amongst the hard workers- DH still is of course though not exactly highly paid. Every time we feel we get anywhere we're straight back- got through the boy's dx's and started my won related business: ds4 failed his developmental checks. i;d gladly give my leg- likely both- for the boys to not need their DLA but I can't do that so we do.
And if we did not get DLA and crucially Carer's the rent would not be met (lost our house years and years ago through a redundancy related DH's illnes which was exghaution caused by what we now know is ds1's ASD but thought then was just normal toddler behaviour!). So we'd be in a homeles sunit, the asd boys in foster (as they could not access the unit), then council housing costing a massive amount financially and in terms of reduced life outcomes for the boys. DS3 might be severe enough to be - as people lovingly term- an 'economic write off' but ds1 is quite the opposite, a proper little entrepreneur, and i would ahte to see his confidence and chances affected even more.