hello,i have a view from the severe side of the spectrum

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    Anonymous

    hi everyone,i was a member here a long time ago when i was a lot further down the spectrum,i was severely classic autistic-low functioning,i was under the label of severe intellectual disability as i couldnt verbally talk and was in my own world almost all the time.i couldnt type without talking in third person or different pronouns as i didnt understand 'i vs you'.several years on,i got kicked out of the secure residential home i was in for trashing the place and it started a change in my life though in a way i didnt agree with.i was sectioned [locked up without my consent] in a hospital for people with intellectual disability and assessed every day as well as given intensive therapies including SALT,SIT,music/sound therapy,OT to see what functioning i had and what was very damaging form of ABA. quite miraculusly i became verbal and didnt have to relie on my communication aid and PECS and makaton...my autism stabilized, and after four months of daily assessment i was rediagnosed as having mild intellectual disability, and my classic autism is around the moderate mark currently but i still have a lot of behavioral and neurological throwbacks to being severely autistic like my thinking,my functioning,my behaviors,my highly severe sensory issues,my toileting problems and understanding and my severe challenging behavior.i was kicked out of my last care home over a year ago and was put in respite care,this was the change i needed as much as it disrupted my life,the social services realised i was no good living with other people after years and years of being institutionalised with them so... i was given my own apartment in a care facility and once settled they even cut my support down from 2:1 support day and night,to 1:1 support day and night,i have to have constant supervision in my apartment but i dont notice them most of the time because i am away in my own world,i am glad i no longer have two support staff all the time as they really annoy me being in such a small apartment,talking to each other constantly and treating me like i dont exist.i love having my own apartment,i have a support cat-yes,a support cat called mr shadow who touches me with his paw when i have any challenging behaviors which helps calm me and sits on me when i have an epileptic seizure,he follows me everywhere and makes sure im comfy in bed before leaving me to go and relax.and the poor boy has special needs himself, he has an illness where his immune system is attacking itself and causing severe allergies and overgrooming behavior,he has torn all his fur out and is cut all over he even bites between his toes,he has just started on a immunosupressant drug like what people with aids are given,which will weaken his immune system and can cause illnesses through it,but its the only thing thatll work.i cant recommend animals enough for severely autistic children,they helped bring me out of my world when i was 5,and ever since then i have had a affinity with animals.so....what do i feel about being verbal? i am speech impaired as i have complete visual imagery in my head and it takes some time to translate the imagery to language and to speak it,i can speak much better if i read off something but i am highly overloaded by speaking,i wish i had never been made verbal if i am brutally honest because it hurts me to speak and when you get verbal you get a lot of expectations placed on you to speak.for me,i function so much better if i use a communication aid so after several years of thought,i am going to save up for an ipad and proloquo2go and use it when i need it;ie not 24/7 but to remove the worst of the overload i get from communication,no one ever thinks of this or even knows of this when they help their child try to be verbal although perhaps for me it was worse as i only became verbal around 28.i am an autistic and intellectual disability activist and advocate,and love helping people understand my conditions;i especially appreciate being able to give hope to parents of severely autistic kids.i have a youtube channel all about the issues from the severe/moderate side of the spectrum and intellectual disability,epilepsy,LGBT etc,ive not been doing it for long so my videos arent that great i dont think but id love it if any of you could check my videos out and see what you think.https://www.youtube.com/channel/UCL-5O1zu28-332GUeMR6_aAi make videos on demand as well,so if you would like me to speak on a particular subject please tell me,i made the video about head banging for a fellow user/friend on an other autism forum so she could teach her colleagues about why we do it.i hope to speak to some of you soon and will help with anything i can,from emlyn.

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