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 completely agree about the need to cultivate compassion and the right for autistic people to be themselves, and to create a world where they can thrive. I’ve been told that my son shouldn’t be allowed out if he can’t be controlled. He can at times have really extreme meltdowns that clearly disturb others around us. It made me so angry. He has as much right to be out and enjoy the places the rest of us do. I have had to fight for everything he needs all his life. One battle I never won for him was one on one ot sessions at school. They just kept saying he didn’t have the focus needed and denied him them all the way through school. I hate feeling his fine motor skills have been held back because of this. Maybe he would have mastered cutting his food himself or self care skills if they allowed him those sessions. I am still trying to teach him them myself but I’m not a professional. He was denied college because he wouldn’t quote, benefit from it, as well. I fear for his future when I see what passes for care in supported living and care homes etc. Did you know someone in a residential care home is only allowed £35 a week for personal expenses! How can anyone thrive and have a decent standard of life on that! I always tell everyone my death is not an option. They laugh but I see what awaits my son when I’m gone and it terrifies me.
Yes ot deeply frustrates me that professionals assume a lack of ability, so they don't give the opportunities, and then take the outcome of that refused opportunity as evidence they were right. This is not equality.
Were you able to get him OT outside of school, from a community provider? (I don’t know how the British system works, but a lot of kids in the US get denied school OT who probably shouldn’t , but can get “medical” OT paid by insurance). OT doesn’t just help with motor skills, they work on sensory integration and regulation, too, which reduces meltdowns and improves executive functioning. Deciding someone couldn’t benefit from a modality because they don’t yet have capabilities that the modality is designed to improve really is a terrible catch-22, isn’t it? I’m sorry that happened to your son.
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 completely agree about the need to cultivate compassion and the right for autistic people to be themselves, and to create a world where they can thrive. I’ve been told that my son shouldn’t be allowed out if he can’t be controlled. He can at times have really extreme meltdowns that clearly disturb others around us. It made me so angry. He has as much right to be out and enjoy the places the rest of us do. I have had to fight for everything he needs all his life. One battle I never won for him was one on one ot sessions at school. They just kept saying he didn’t have the focus needed and denied him them all the way through school. I hate feeling his fine motor skills have been held back because of this. Maybe he would have mastered cutting his food himself or self care skills if they allowed him those sessions. I am still trying to teach him them myself but I’m not a professional. He was denied college because he wouldn’t quote, benefit from it, as well. I fear for his future when I see what passes for care in supported living and care homes etc. Did you know someone in a residential care home is only allowed £35 a week for personal expenses! How can anyone thrive and have a decent standard of life on that! I always tell everyone my death is not an option. They laugh but I see what awaits my son when I’m gone and it terrifies me.
Yes ot deeply frustrates me that professionals assume a lack of ability, so they don't give the opportunities, and then take the outcome of that refused opportunity as evidence they were right. This is not equality.
Were you able to get him OT outside of school, from a community provider? (I don’t know how the British system works, but a lot of kids in the US get denied school OT who probably shouldn’t , but can get “medical” OT paid by insurance). OT doesn’t just help with motor skills, they work on sensory integration and regulation, too, which reduces meltdowns and improves executive functioning. Deciding someone couldn’t benefit from a modality because they don’t yet have capabilities that the modality is designed to improve really is a terrible catch-22, isn’t it? I’m sorry that happened to your son.
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.
If vaccines cause autism, explain autism before vaccines. Autism has been a part of the human experience a lot longer than vaccines have been.