This probably isn't any help but as a father to a severely disabled autistic girl it feels the entire medical system is broken. There's so much future squandered in the hopes of short term profit paid for at the cost to the next generation.
I know people say "Autism can't be cured" etc. But having met other families in this process and visiting group homes and the potential for a life of happiness for kids like ours my hope grows bleak and I honestly catch myself crying when alone. Especially seeing neurotypical children playing or how other parents don't see the gift of a natural life their families have. I too turned to all sorts of exotic ideas of diets, behavioral therapies, vitamins and it was out of desperation. I put my daughter through a stem cell study at Duke that seemed promising but I then saw danger of losing potentially my daughter to experimentation. I was told by neurologist and psychiatrist that my daughter would never talk, never interact with the world. Today she's talking. I credit ABA, stem cell infusions, and a diet focused on fat consumption (basically keto) but in that same vein I've also learned to accept our fate.
Now I've cut way back and I just enjoy the gift of being with her. Her gains and triumphs whilst they pale in comparison to a neurotypical kid are harder but just as monumental. I know now the best thing parents or families in our position is to create a world that would accept our kids, take care of them, and create for them a place where individually they could have a fulfilling life. Yes a cure would be great but there are so many kids with different conditions, illnesses, accidents and circumstances that will have denied them a future. Modern day society doesn't adequately cover what children like ours will need when we are gone.
I know people say "Autism can't be cured" etc. But having met other families in this process and visiting group homes and the potential for a life of happiness for kids like ours my hope grows bleak and I honestly catch myself crying when alone. Especially seeing neurotypical children playing or how other parents don't see the gift of a natural life their families have. I too turned to all sorts of exotic ideas of diets, behavioral therapies, vitamins and it was out of desperation. I put my daughter through a stem cell study at Duke that seemed promising but I then saw danger of losing potentially my daughter to experimentation. I was told by neurologist and psychiatrist that my daughter would never talk, never interact with the world. Today she's talking. I credit ABA, stem cell infusions, and a diet focused on fat consumption (basically keto) but in that same vein I've also learned to accept our fate.
Now I've cut way back and I just enjoy the gift of being with her. Her gains and triumphs whilst they pale in comparison to a neurotypical kid are harder but just as monumental. I know now the best thing parents or families in our position is to create a world that would accept our kids, take care of them, and create for them a place where individually they could have a fulfilling life. Yes a cure would be great but there are so many kids with different conditions, illnesses, accidents and circumstances that will have denied them a future. Modern day society doesn't adequately cover what children like ours will need when we are gone.