am pretty disapointed.
it seems am completely ignored by parents whenever have wrote am against the idea of the whole concept of a autism cure on self;am not against others having the choice or a best interest decision by their specialists and profesionals made in their favour if they have no mental capacity to make the decision themselves.
they go on to write as if they havent even read the posts of mine when am often campaigning for our view to be heard, they say their child is LFA,that LFAs cannot state how 'they' feel and its not something that shoud be lived with and shoud be cured-as if theyre blanking the fact am a living breathing LFA posting in front of them,they dont want to take in opinions that differ to their own nor accept that some of us are actualy able to communicate well in text form.
people say they wish their son/daughter/people with LFA coud speak and tell them what theyre thinking but when one does they blank it out of their minds.
people are still using LFA as a throw back to meaning just profound autism and a description of someone with total lack of communication and the most complex severity of autism known to man,LFA is a spectrum just like HFA and we are affected very differently-the only thing we all share is that we all have some level of intelectual disability and this is what makes our autism present the way it does.
someone with extremely complex profound or severe autism will have severe intelectual disability on top,mine is mild so the severe autism appears differently to severely autistic people with much worse ID.
am completely against a cure of self,because have lived a life as a severely disabled person, have developed experiences and thoughts and interests based on the way am today, woud not be the same person or have the same strengths and qualities that have now if it wasnt for being this person.
am also acutely against the idea of change and woud never accept something that means change, and nor woud everyone else with severe or profound autism who have good support and specialist equipment tailored to their needs available to them,change to us is like a dog chasing a cat,we will run as fast as we can or we will stand there and fight it-we wont let it happen.
am feeling not good that am not able to be understood by many parents of severely autistic kids as always thought they woud be allies against the sea of ignorance and misunderstanding that recieve in the autistic community.
please parents;please prove this wrong and sympathise with what am saying.
am very sympathetic of parents,mine are still affected by the disabilities of mine even though have not lived there in many,many years,mum is severely depressed;something she developed when em was five years old and she wasnt able to cope any longer,her religeon disowned her and blamed her for having a child posessed by the devil,the doctors had said she had a severely disturbed child who needed punishing,including for the non verbalism.
yes it is very hard for parents to cope with our needs and difficulties especialy when they lack the support and knowledge,but we can have good quality of lives and improve greatly with the right medications,the right support staffing behind us,the right secure environment,the specialist equipment,supportive and encouraging therapies etc.
as adults away from the family home we tend to develop much better friendships with our families, had never recognised dad as 'dad' until a few years ago,still dont ever use it though apart from online.
am just wishing to be understood,it is hard to feel good when are misjudged by the autism community and the autistic community.
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