I think many problems are caused because in the autistic and wider community, the existence of extremely severe autism that comes coupled with learning difficulties is often overlooked, hidden and even denied. My son was diagnosed with severe classic autism at 18 months and has severe learning disabilities and epilepsy. In all honesty, sometimes I pray for a “cure”. Not because I see him as broken or autism as something terrible, but because of how severe the consequences for him are. Until you have watched someone repeatedly smashing their head off walls and floors (nearly killing themselves) because they are upset or frustrated, you will never understand the fear. Knowing that they will never be able to go out alone, or even go to the toilet on their own because they can’t master simple tasks like wiping and washing hands is heart breaking. No one wants their child to have to be dependent on someone else 24 hours a day for their wellbeing and safety for the rest of their lives which is what those of us with family at the most severe end of the spectrum and autism face. My son is even incapable of communicating if he is in pain and during a seizure dislocated his shoulder. He showed no signs of pain, Not even the doctors realized until later and we tried to put his coat on. Imagine being that disconnected from your own body! My son is amazing and I love him dearly, but the severity of his autism is truly scary and the resulting behaviours have nearly killed him on more than one occasion. Is it so wrong to not want that for him?
I think there are a few challenges in communicating everyone's experience.
Learning disability can have a profound impact as you have described, but there is also a rift between Autistic adults and parents of Autistic children.
For me, i have experienced personally many of the support needs you have described over the course of my life. My privilege is that I do not have a degree of LD that requires 24 hour care.
That said, I do have to access social care for my own needs and the needs of my children.
For me, curist narratives are a threat because autism is a part of me, not a separate thing. If someone took it away from me I would be an entirely different person and not the David I am today.
There are certainly many cases where life would be remarkably easier as a non-Autistic version of me, but I have had to find space to cultivate compassion for myself and the rights of my fellow Autistic people to be who they are regardless of support needs.
I want you to know that I hear you, and appreciate your non-combative approach to this topic.
I have had autistic people online tell me I know nothing about autism when I talk about my son’s autism and learning difficulties and that I’m lying about him. I’ve been looking after him for 24 years. The problem is autism failure of society to show all degrees of autism and associated comorbidities.
I think many problems are caused because in the autistic and wider community, the existence of extremely severe autism that comes coupled with learning difficulties is often overlooked, hidden and even denied. My son was diagnosed with severe classic autism at 18 months and has severe learning disabilities and epilepsy. In all honesty, sometimes I pray for a “cure”. Not because I see him as broken or autism as something terrible, but because of how severe the consequences for him are. Until you have watched someone repeatedly smashing their head off walls and floors (nearly killing themselves) because they are upset or frustrated, you will never understand the fear. Knowing that they will never be able to go out alone, or even go to the toilet on their own because they can’t master simple tasks like wiping and washing hands is heart breaking. No one wants their child to have to be dependent on someone else 24 hours a day for their wellbeing and safety for the rest of their lives which is what those of us with family at the most severe end of the spectrum and autism face. My son is even incapable of communicating if he is in pain and during a seizure dislocated his shoulder. He showed no signs of pain, Not even the doctors realized until later and we tried to put his coat on. Imagine being that disconnected from your own body! My son is amazing and I love him dearly, but the severity of his autism is truly scary and the resulting behaviours have nearly killed him on more than one occasion. Is it so wrong to not want that for him?
I think there are a few challenges in communicating everyone's experience.
Learning disability can have a profound impact as you have described, but there is also a rift between Autistic adults and parents of Autistic children.
For me, i have experienced personally many of the support needs you have described over the course of my life. My privilege is that I do not have a degree of LD that requires 24 hour care.
That said, I do have to access social care for my own needs and the needs of my children.
For me, curist narratives are a threat because autism is a part of me, not a separate thing. If someone took it away from me I would be an entirely different person and not the David I am today.
There are certainly many cases where life would be remarkably easier as a non-Autistic version of me, but I have had to find space to cultivate compassion for myself and the rights of my fellow Autistic people to be who they are regardless of support needs.
I want you to know that I hear you, and appreciate your non-combative approach to this topic.
I have had autistic people online tell me I know nothing about autism when I talk about my son’s autism and learning difficulties and that I’m lying about him. I’ve been looking after him for 24 years. The problem is autism failure of society to show all degrees of autism and associated comorbidities.