Vaccines as Alternatives to Antibiotics for Food Producing Animals. Part 1: Challenges and Needs
Italian Senate Repeals Vaccine Mandates

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Aimee Doyle

Checking back in, since this issue matters a lot to me...

Did Tara Marshall ever provide any additional information for the parents on this site? I know several parents asked about local programs and how to find individuals with Aspergers/HFA who would be friends/companions for their children and young adults.

I'm also curious how her circle handles severely impaired, nonverbal individuals with autism. The families are desperate...and I suspect the individuals affected are miserable as well. Has she provided (from her perspective as an adult with Aspergers) helpful and effective advice for parents of those individuals? How much time has she spent with an individual who is aggressive or self-injurious, trying to help them? I'm not talking as a clinician or a behavioral analyst - I mean as a friend who cares.

I've been in the autism trenches for over 25 years, and every individual I've know who has been severely, or even moderately impaired, has been isolated except for family and paid caregivers. They have been isolated not just from group ND events, but there seems to no interest in developing a "Best Buddies" kind of approach between Aspies and those who are severely affected. A Best Buddies program would be great- and provide one-on-one interaction and nonstressful activities such as what Grace suggested, like hiking, listening to music (or movies). But there doesn't seem to be anything like that, that I can find.

If I'm wrong, I'd be happy to be wrong - and someone please point me to those resources. The DC area is large - something should exist here. I just want friends for my son. Grace said that auties are capable of deep friendship. I'd like that for him. He's not verbal enough to communicate online so his friendships need to be in-person, frequent, and long-term in commitment (takes him quite a while to accept new people - since there's been a lot of turnover of companions and caregivers in his life).

If I'm right, then this is a serious problem, because then a large part of the autism "community" doesn't effectively have a "community." Everyone needs far more than supports and services - everyone needs social connection and friendship.

Aimee Doyle

@Pat -

Gosh - what a wonderful offer. I really thank you for thinking of it. And I'm sure my son would love it - but he's not high functioning to use FB or email. His Disney obsession mainly involves watching Disney movies, watching clips of Disney movies, and repeating scripts from Disney movies. And, of course, playing Disney videos games.

But your kind thoughts made my day.

Pat Stavola

Aimee Doyle,
My son, 21, would love to talk to someone about Disney.
He is considered HF Autism but his obsessions are Disney, Spongebob, Thomas the Tank Engine, Pokemon so like your son, his peers, both NT and those w/special needs, get tired of hearing about his obsessions.
He also likes movies with monsters or robots, Transformers, Pacific Rim, Godzilla and Star Wars.
Maybe they can connect on FB or by email.

Pat

Hallie

There is a new wonderful facility outside of Dallas that just opened where a friend is placing his 19 year old son, called Daymark Living, it’s for young adults who have aged out of the system (for autism and Down syndrome)... it’s attracting families from all over the country. Might be worth checking out:
https://daymarkliving.com

Grace Green

Aimee, thanks for your comments. Someone in my family had just thought of Carolyn's suggestion of a pet. Dare I say it, but autistic people can be lacking in empathy and may find it difficult to relate to a severely autistic person. The young men more so than the young women. I'm trying to put my finger on something about how I feel. Often we would prefer to be on our own. As a child, and even now, I hate things that are organized, like parties, events, outings. Hiking with a friend, a one-to-one conversation, listening to the radio etc. are what I prefer. I don't mean to make light of the problems facing those like the young lady in the photo, but think there may be other ways round it. Please, everyone, feel free to grill me on this, it may help me to express my thoughts.

Carolyn ksmom

Can you manage pets or get her a service dog? I know it isnt the same and does not minimize your pain but i was bullied and ostracized for a physical issue and the dog meant so much to me...

Aimee Doyle

@Grace - thank you for your thoughtful comments. I know you are kind and caring. I know life is difficult at all levels of the spectrum, and I know the social isolation is a problem across the board. But Aspies at least do seem to have a community - and thought they claim to speak for - and care about - all those with autism, I just don't see it where I live. For those who are severely impaired,or even moderately impaired, I haven't found a community.

It looks too, from the comment thread, that lots of people have similar experiences with their young adults, and would welcome the kind of interaction and friendship that Tara speaks about. I hope she responds with solid information about her program works, and whether there are other such programs, where they are and (if not) how we can create such programs in our communities. She only talks about women in the group - I wonder if there are high functioning/Aspie men who do this as well? My son would love to have a friend who is a guy for video games, basketball, watching Disney movies, going hiking.

He really needs friends his own age to do things with, people who will want to spend time with him just for who he is (not paid therapists, not paid companions, and not his aging parents).

Grace - you asked about the role of family. We do get together with extended family for holidays - and family members play games with my son and talk with him about Disney. But, after the holidays are over, everyone has busy lives. Many of his cousins have careers, marriages, and young children. And they don't really "get it." That's why I wish the neurodiversity movement were really inclusive of those on all levels of the spectrum.

michael

Kim, the photo breaks my heart, but it also outrages me. 18 years and "they" have ignored you and your daughters. Broken children; broken families; broken lives; broken policies; broken government; broken institutions; broken trust; broken hearts.

Aimee Doyle

Hi Tara - thanks for letting me know! I've been in the autism trenches for over 25 years and this is the absolutely first time I have heard of this happening. That's great.

Sorry for the disparagement, but my son has generally been ignored when he's around individuals who are higher functioning. They find his Disney obsession an irritant. He has not been allowed to be part of certain groups because he is "not high functioning enough." Women on the spectrum ignore him (he's 28). So I'm a little bitter - I have looked long and hard - and it always hurt to have your child excluded.

The only people who have ever been a part of his life are those who have been paid to be there, or those who are family. I don't feel that the ND movement has really reached out to people like my son.

Do you know any groups in DC that are a mix of low and high functioning adults? He really wants friends, not just people who are paid to be around him.

Leora Leon

As kids on the spectrum age out, there are horrifying statistics of young adults and mature adults that stay at home with no programs. Until our community does something about it, it will never change. There will always be something to fight for... And 23 years later, I for one, am exhausted.

Grace Green

I find it hard to know what to say on this so sad topic. Many autistic people, especially Aspies, really want to have social contact, and spend a lifetime trying to get it to work, only to be disappointed time and again. I found eventually I was reconciled to my own company. Things which help are; having an absorbing interest; having one close friend (could be a relative); doing activities alongside someone. I think when we live alongside people NTs might think we don't notice them, or don't appreciate them, when actually we do, it's just we don't communicate that. I understand that I'm speaking from my experience as an Aspie, but the social isolation can be a problem for us too.

Aimee, it must be so hurtful to see your child treated like that, I've had similar experiences. Also, when I was a child I did befriend some autistic children who came briefly to our school. And remember Cathy's recent tale of the kind child at the swimming pool. One good experience like that can make up for many more of the hurtful ones. I even think many "neurotypical" relationships might be rather shallow compared to what we auties are capable of. Don't families like those here get together at all?

Tara Marshall (same name as my maiden name!). Your work sounds really good. Thanks for describing it to us. I really think this could be a great forum for bringing together people who could be of help to each other.

MelissaD

Hi Tara: that is fantastic that you and some other high functioning people on the spectrum do that. I know I have never heard of anything like that in our area. Are there any organizations that you know of that keep track of programs like yours, so that we could find them in our areas for our kids that desperately need a friend or someone to hang out with that understands the spectrum? Thanks.

Peter Miles

To paraphrase Sir Winston Churchill "never has so much been destroyed for so many by so few". What so many people do not understand is that, not only does autism take away health, skills and abilities, but also the ability to have meaningful relationships. We love our children despite the fact we may get very little in return. We are constantly stretching our ingenuity and creativity to find something of value for our children knowing that the only recognition we will get is that our children seem to be less stressed and perhaps less demanding for a time. We are all living in our own personal hell,but to Quote Sir Winston again "If you're going through hell, keep going" and "Never, never, never give up".

Tara Marshall

Aimee Doyle:
Hi, I'm one of the Autistic people you're disparaging. I run a Phoenix area Support Group which is open to people of all support needs. Most of us are verbal, but I sign a but and I also have spoken with our members on manners about AAC, such as not finishing their sentences.

I also work in Speech Therapy, and I remain friends with several of my former clients and their families, including people who no longer receive services with me.

Just because you haven't met us doesn't mean we don't exist. I know at least 4 other HFA/Aspie women who work in education who also have a lot of younger people they mentor and are friends with.

susan welch

Kim, your few words and picture say so much.

So many of us relate to it.

Gayle

Kim-God bless and protect our adult family members with autism. I also could fill that pool with tears and I have cried so much over the years about my son's autism it could fill the ocean.

John Stone

Kim

May the world never forget our children - perhaps we should have a day, ‘Massacre of the Innocents’ perhaps.

John

Aimee Doyle

Amen to the tears, Kim.

Where is the neurodiversity movement in the lives of individuals with moderate and severe autism? They claim that they are the only ones that "get it" (autism). Why aren't they providing support and friendship, spending time with the less able members of the spectrum? Everyone needs a community, but individuals like my son (and your daughter) seem to be shut out of the neurodiversity community.

I have yet to hear of ONE high functioning individual who spends time with and is a friend to a lower-functioning individual with autism. I know when I've tried to take my son to "autism groups" he is routinely ignored, even when he tries to get people to play with him.

Angus Files

Our annual plastic pool has come and gone for this year.If were lucky we get two years out of it,thats if, it survives the kiddy chutes, chairs,bicycles etc that are incorporated into the autism world of what should be in a kiddy paddling pool.The holes that are caused dont matter until the water drains out,then its a different unexplainable problem to a 20 year old non verbal, that the big tear lets the water out...and you cant splash anymore!!

We could do at a big demo finishing it up at a sandy beach.Everyone kneel on the beach, dig a hole and place our heads in the hole for a photo shoot.That would depict the treatment that has been mooted out to us and or kids.

Pharma For Prison

MMR RIP.

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