5 ms·

I guess stories of people with autism who are merely socially scared and shy are easier to approach. Meanwhile there are parents who live every day in fear of h

I guess stories of people with autism who are merely socially scared and shy are easier to approach. Meanwhile there are parents who live every day in fear of how the hell can their son or daughter endure when they die. My daughter was diagnosed severe/non-verbale at age 3. If this woman is able to live a life such as this and able to use the bathroom, have a job, etc I'm hopeful of at least that for my daughter. It gives me hope. But I've met parents of children who are much much worse. Something must be done to change this narrative that Autism isn't curable. The stigma certainly doesn't help either.

rtpg 9y ago
I hope we can find treatments and the right set of accomodations. A thing I heard is that you can't cure many mental illnesses, much like you often can't cure a missing limb. But if you find the right prosthetic your life can become much better. I hope we can find this for more and more people on the spectrum.
sudosteph 9y ago
Temple Grandin gives me hope for severely autistic people. She's an amazing example of someone who has done well for herself despite very pronounced deficits and original diagnosis of non-verbal autism. I'm not very hopeful that it will ever be fully "curable", though maybe I'll be proven wrong. If we could at least medically correct for the overstimulation and hypersensitivity aspects, it would be such a huge win. I strongly believe the most negative and impairing parts of autism stem from this part. The people who are "merely" socially awkward often hide these aspects or avoid situations that would trigger them (ex: I carry ear plugs on my keychain because street noise or crowds in restaurants can be overwhelming, and I don't do tech conferences any more for the same reason). The more severe amongst us unfortunately usually need more than muffled sound to feel in control. That said, I do think there are ways of coping, tools, practices, that will make life for autistic people much better going forward. We need to keep researching those just as much a cure or pregnancy-time diagnosis. I hope things do get better for both you and your daughter.
tinyegg 9y ago
You may want to try switching to non-scented soaps, laundry detergent and cleaners. Do you feel or have you been told she has sensory processing disorder? Another thing to try is talking to her, a lot. If you have a wife who works have her stay at home and work with your daughter on meeting milestones. Get whole genome sequencing done. See if she has any issues with methylation etc. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4203003/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4203003/ Give her Dha and a multivitamin with more bioavailable forms of each vitamin or a whole food vitamin. My daughter will take these along with greens and fruit in smoothie form. Basically, do everything you can.
foobarbazetc 9y ago
Not a direct reply to this, but I found “Neurotribes” by Steve Silberman a great book on parenting for austistic kids.
mess_with_cats 9y ago
The way it looks now Autism isn't curable, sort of like schizophrenia, but an even deeper ingrained part the person. As far as i understand even if we could, "cutting" it out or modifying it would change the personality drastically. Its very manageable though, and depending on where on the spectrum you are there still a chance for a completely normal life. I think the stigma is strong because the people that are "highly functional" enough to hide it, will. No one at my workplace knows that i have it and just think im a tad weird. I think i prefer not to tell anyone since it might make colleagues doubt my performance and abilities, or make it harder for me getting job next time.
Aaargh20318 9y ago
> Something must be done to change this narrative that Autism isn't curable. As an autistic person I don't think it's curable, nor do I think it's something that I would want cured. The impression I get is that my brain is just wired differently from allistic people, 'curing' me would basically mean replacing me with someone else.
cbhl 9y ago
The message of "mitigating not curing" autism comes from adults who have been through really bad attempts at cures (usually marketed to their parents). Some young adults with autism I knew had undergone "applied behavior analysis" that manifested as corporal punishment (being squirted in the eyes with a water bottle; being denied access to the bathroom; being beaten with a stick; having drugs hidden in food) that are completely unacceptable for a child. I truly believe that every person with autism would vastly prefer being able to live independently. Science needs to find a "mechanism of action" for autism before it would be possible to find a "cure", which means people with autism being subjected to medical research. (Have you ever tried to get a person with autism to lie still in a MRI?) In the meantime, the best standard of care is to teach strategies to help them live as independent a life as possible -- and to teach these strategies in a caring and humane way. For what it's worth, psychiatrists are doctors, and therefore covered under the single-payer health care in Canada. If you live in the United States, consider whether moving north could be beneficial for your daughter. (If she has friends at school, though, I would avoid moving her.)
- kraig911 9y ago
  Canada denies families with Autism :( already looked into it. The system here pushes ABA hare. Very hard. People swear by it. But when I saw my daughter gets stressed and count to 10 touches her eyes and ears and says random strings of whatever she can think of because she thinks someone wants to hear something... I pulled her out literally last month. Autism is just scary. Literally I cannot go to a store with her. I've tried to do an MRI I know... I even participated in a big research study with SCTs.
kraig911 9y ago
I wonder if it's because we're afraid of what 'cured' means. I know to some people who are mild on the spectrum their autism could be a source of strength and wonder. I would be remiss to say that if my daughter can tend to herself and lead an enriched life that to me is 'cured' she could still be autistic but she could talk and if someone touched her inappropriately or if she was in pain she'd be able to tell me... that to me be is at least in a step in the right direction. Visit a group home and it's one of the hardest areas to see. Young autistic adults incessantly masterbating, covered in bruises, unable to use a bathroom etc. Yet they are still intelligent and are self-aware. That to me is the hardest pill to swallow. Right now treatments are being tested with umbilical cord tissue originated stem cells that are extremely promising. My daughter participated at one study at Duke and went from 0 words to a little over 100. Her ATEC score dropped from 120+ to around 70. However I fear this valuable research will die if we start normalizing autism or other mental illness as something we just 'deal with' I've read Neurotribes and I can understand the argument but there's rehabilitation and I think the metaphor around a prosthesis is very accurate.
- sudosteph 9y ago
  Strength and wonder? That's a very odd description. More like, it's the only way we know how to interpret ourselves, our world, our relationships. It's not the easiest, but for those of us that have been able to find meaning and value through this interpretation... why would we give that up just to make other people feel more comfortable around us? We're not hurting anyone. That's why many adults who function decently don't want to be cured. Of course we support medical research and treatment to improve functioning, especially for severe cases. That's not what a cure is though. A cure is becoming a fundamentally a different person. Or if some folks get their wish, it's pre-natal detection of autism so parents can prevent autistics from being born at all. We don't want to normalize autism to prevent treatment, we want to normalize it enough so that we don't get written off as valueless people not worthy of being born.

rtpg 9y ago

I hope we can find treatments and the right set of accomodations. A thing I heard is that you can't cure many mental illnesses, much like you often can't cure a missing limb. But if you find the right prosthetic your life can become much better. I hope we can find this for more and more people on the spectrum.

sudosteph 9y ago

Temple Grandin gives me hope for severely autistic people. She's an amazing example of someone who has done well for herself despite very pronounced deficits and original diagnosis of non-verbal autism. I'm not very hopeful that it will ever be fully "curable", though maybe I'll be proven wrong. If we could at least medically correct for the overstimulation and hypersensitivity aspects, it would be such a huge win. I strongly believe the most negative and impairing parts of autism stem from this part. The people who are "merely" socially awkward often hide these aspects or avoid situations that would trigger them (ex: I carry ear plugs on my keychain because street noise or crowds in restaurants can be overwhelming, and I don't do tech conferences any more for the same reason). The more severe amongst us unfortunately usually need more than muffled sound to feel in control. That said, I do think there are ways of coping, tools, practices, that will make life for autistic people much better going forward. We need to keep researching those just as much a cure or pregnancy-time diagnosis. I hope things do get better for both you and your daughter.

tinyegg 9y ago

You may want to try switching to non-scented soaps, laundry detergent and cleaners. Do you feel or have you been told she has sensory processing disorder? Another thing to try is talking to her, a lot. If you have a wife who works have her stay at home and work with your daughter on meeting milestones. Get whole genome sequencing done. See if she has any issues with methylation etc. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4203003/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4203003/ Give her Dha and a multivitamin with more bioavailable forms of each vitamin or a whole food vitamin. My daughter will take these along with greens and fruit in smoothie form. Basically, do everything you can.

foobarbazetc 9y ago

Not a direct reply to this, but I found “Neurotribes” by Steve Silberman a great book on parenting for austistic kids.

mess_with_cats 9y ago

The way it looks now Autism isn't curable, sort of like schizophrenia, but an even deeper ingrained part the person. As far as i understand even if we could, "cutting" it out or modifying it would change the personality drastically. Its very manageable though, and depending on where on the spectrum you are there still a chance for a completely normal life. I think the stigma is strong because the people that are "highly functional" enough to hide it, will. No one at my workplace knows that i have it and just think im a tad weird. I think i prefer not to tell anyone since it might make colleagues doubt my performance and abilities, or make it harder for me getting job next time.

Aaargh20318 9y ago

> Something must be done to change this narrative that Autism isn't curable. As an autistic person I don't think it's curable, nor do I think it's something that I would want cured. The impression I get is that my brain is just wired differently from allistic people, 'curing' me would basically mean replacing me with someone else.

cbhl 9y ago

The message of "mitigating not curing" autism comes from adults who have been through really bad attempts at cures (usually marketed to their parents). Some young adults with autism I knew had undergone "applied behavior analysis" that manifested as corporal punishment (being squirted in the eyes with a water bottle; being denied access to the bathroom; being beaten with a stick; having drugs hidden in food) that are completely unacceptable for a child. I truly believe that every person with autism would vastly prefer being able to live independently. Science needs to find a "mechanism of action" for autism before it would be possible to find a "cure", which means people with autism being subjected to medical research. (Have you ever tried to get a person with autism to lie still in a MRI?) In the meantime, the best standard of care is to teach strategies to help them live as independent a life as possible -- and to teach these strategies in a caring and humane way. For what it's worth, psychiatrists are doctors, and therefore covered under the single-payer health care in Canada. If you live in the United States, consider whether moving north could be beneficial for your daughter. (If she has friends at school, though, I would avoid moving her.)

kraig911 9y ago
Canada denies families with Autism :( already looked into it. The system here pushes ABA hare. Very hard. People swear by it. But when I saw my daughter gets stressed and count to 10 touches her eyes and ears and says random strings of whatever she can think of because she thinks someone wants to hear something... I pulled her out literally last month. Autism is just scary. Literally I cannot go to a store with her. I've tried to do an MRI I know... I even participated in a big research study with SCTs.

kraig911 9y ago

I wonder if it's because we're afraid of what 'cured' means. I know to some people who are mild on the spectrum their autism could be a source of strength and wonder. I would be remiss to say that if my daughter can tend to herself and lead an enriched life that to me is 'cured' she could still be autistic but she could talk and if someone touched her inappropriately or if she was in pain she'd be able to tell me... that to me be is at least in a step in the right direction. Visit a group home and it's one of the hardest areas to see. Young autistic adults incessantly masterbating, covered in bruises, unable to use a bathroom etc. Yet they are still intelligent and are self-aware. That to me is the hardest pill to swallow. Right now treatments are being tested with umbilical cord tissue originated stem cells that are extremely promising. My daughter participated at one study at Duke and went from 0 words to a little over 100. Her ATEC score dropped from 120+ to around 70. However I fear this valuable research will die if we start normalizing autism or other mental illness as something we just 'deal with' I've read Neurotribes and I can understand the argument but there's rehabilitation and I think the metaphor around a prosthesis is very accurate.

sudosteph 9y ago
Strength and wonder? That's a very odd description. More like, it's the only way we know how to interpret ourselves, our world, our relationships. It's not the easiest, but for those of us that have been able to find meaning and value through this interpretation... why would we give that up just to make other people feel more comfortable around us? We're not hurting anyone. That's why many adults who function decently don't want to be cured. Of course we support medical research and treatment to improve functioning, especially for severe cases. That's not what a cure is though. A cure is becoming a fundamentally a different person. Or if some folks get their wish, it's pre-natal detection of autism so parents can prevent autistics from being born at all. We don't want to normalize autism to prevent treatment, we want to normalize it enough so that we don't get written off as valueless people not worthy of being born.