Hi,new member

[Fluffymainecoons]

Hi everyone, I hope you are all coping ok with thecway COVID-19 has affected our routines and lives.

my name is Emlyn William Scott,I’m 36 And ftm transgender.
I first found out about NDSA on Instagram, Ive Not been on IG that long,my IG name is autieartist.

i have been fighting for undiagnosed and diagnosed autistic, ID and disabled rights for many years through all my connections In the offline community, but since I got moved to a different borough I lost everyone.

I was diagnosed with both severe grand mal epilepsy and severe autistic disorder/classic autism as a young toddler,I have a lot of built up minor brain injuries caused by both my seizures and head Banging.
i also have a lot of other conditions including mild ID,severe visual processing difficulties,A severe physical disability caused by illegal restraint which snapped a piece of my lower spine,as the injury was never spotted till two years ago,it never healed correctly and I’m left in a very difficult to use NHS wheelchair with severe nerve pain and widespread peripheral neuropathy.

i Have lived in secure care since 18 years old,up till then I had outreach carers come into my family home To help my parents,and i communicate with proloquo2go,sometimes some basic/scripted speech,and art.

i Woud love ID and the entire spectrum of autism to be recognised as ND instead of many of our stories being left to ‘warrior’ parents to assume we are trapped and dislike how we are.

 

[ProfessorWorm]

Hi.

 

[Fluffymainecoons]

Hi.

Hi Professor Worm! I hope you are ok and your day was as well as coud be expected.I know it’s Especially hard right now for Autists everywhere.
Is NDSA your organisation?

can I ask you a question on neurodiversity? no one ive ever asked has been able to answer me,I don’t understand....I’ve Always wondered why learning disability (what Everyone else who uses the DSM calls intellectual disability) is not included under ND, as To me,it affects the way I think,behave and function in the same way my autism does,to me it’s a way of being,of course it is a disability in my life but to me I grew up and knew no different, it iscpart of my genetic makeup.it Has it’s good points.

I have an uncle ( I named myself William when changing my name legally in respect to him as he has spent his life institutionalised in a vile hospice in Ireland,he Has profound learning disability (PMLD) no Autism. like me-with the right support and stimulation he can have a good quality of life, He’s just in the wrong place-like me to.
he has so many qualities and interests-it’s so annoying how people class success by your ability to drive,get your own house,be able to work,have children etc instead of the things that our strengths are in and make us happy.

i can imagine people thinking PMLD is a negative thing that needs curing-like they do with our ‘so called’ severe or profound autism but my uncle William was born with it,so he won’t have known any different,it will be a way of life to him I think.

I apologise for going on so much,I don’t even notice it because I have no short term memory and can waffle on, I also only post after I have had my PRN diazepam medication as I struggle greatly with back and forth interacting.

 

[ProfessorWorm]

Sorry about your uncle’s situation, his treatment and yours is abysmal. I waffle too, so no need to apologize for that. NDSA is not my organization, I don’t have one at all actually unless you count the local library I used to volunteer with mine, and I will do my best to answer your question. I am not completely sure either why learning disabilities aren’t included, but I think it may have something to do with it not necessarily being a brain development issue nor is its cause necessarily isolated to just the brain. That same logic excludes people with Down’s syndrome, fetal alcohol syndrome or epilepsy from being neurodiverse even though they may suffer from developmental issues. I don’t really agree with the exclusion of the learning disabled, as you rightly pointed out they benefit from same gains and face many of the same issues. I am also inclined to agree with your opinion that curing your uncle or you would not necessarily be right. In the same way I would be heartbroken and horrified if someone took away my ASD or my queerness I imagine you and your uncle would also be greatly hurt if you lost your PMLD.

Please correct me if any of this is wrong, I haven’t spent much time interacting with the learning disabled community before now and am still learning what is and isn’t acceptable/correct.