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Where Will Your Child with Autism Live When He's No Longer a Child with Autism?

By January 1, 2011

Today, my husband was chatting casually with an acquaintance who knows our son Tom.  Tom is 14, with high functioning autism; he's verbal, pleasant, but clearly "different."  The acquaintance had heard about a nearby residential setting for adults with autism, and mentioned it to my husband.  Her thought was that it might be a good option for our son sometime in the future.

My husband thanked her, but let her know that it's our intention to have our son live with us, at least for the foreseeable future (unless he winds up going off to college or making other educational or career choices that take him out of the area).  If it seems to make sense, we could certainly help him to find an apartment or other living situation nearby, and provide supports as they're needed.

This idea seemed to be a surprise to our acquaintance.  But we have a few reasons for our way of thinking.

First, it seems natural and normal to have members of different generations living in a family dwelling together.  After all, the idea that a single individual would go off on his or her own to establish a home all alone, managing every aspect of daily life, is really very modern (and, in my opinion, not particularly desirable).  Prior to the second world war, it was most unusual - and even today, with jobs so tough to come by, many adult children are continuing to live with their parents well into their twenties and beyond.  Many people, autistic or "neurotypical," find the stress of life alone, with sole responsibility for working, shopping, cooking, cleaning, bills, home repair, car repair, social engagements, travel arrangements and more, to be overwhelming.  What's the great attraction?

Second, while there are high quality, supported options for adults with autism, they are few and far between.  There are none right around the corner from us.  And even a good situation can change over time, as staff turns over and residents come and go.  By the time our son is in his 20's, there will be more options available; for now, though, the idea of a group home or similar setting is a bit anxiety provoking.

Third, we have worked hard (and will continue to work hard) to help our son connect with his local community.  We live in a fairly small town, and after just three years he knows and is well known by many of the people he interacts with on a regular basis.  Librarians, waiters, even the folks at the bowling alley know his name, understand his differences, and have learned to communicate with him comfortably.

Fourth, Tom's begun to earn a place of real respect in this community, specifically for his musical skills.  He's already recognized for his ability as a jazz clarinetist, and he'll be playing with the town band soon.  This is happening not because Tom is a virtuoso, but because his talent and our networking abilities have made it possible for him to meet, interact with and get to know some of the musical leaders in our community.  If he left our town, all those connections - and the respect he's earned - would disappear.

Fifth, we enjoy our son's company.  We have plenty of room, and we're not planning to move.  He does a fine job washing and folding the clothes, feeding the pets, and generally caring for himself and helping out around the house.   What would any of us gain by having live in another community with people he's never met?

Lastly, we want our son to have a home where he feels comfortable and where he's known and loved.  Today, he has us.  In the future, he may find a life partner, friends, or another direction.  If not, in the long run, we'll know that he has a home in a community where he's lived for the majority of his life.  If he needs it, we can certainly set up personal and financial support for after we're gone.  If he doesn't need it - well, nothing's lost.

Of course, not all families with autistic children have the personal or financial resources to have their child live with them - or on their nickel - indefinitely.  And such an arrangement is far easier with a high functioning individual than with an autistic adult who really needs full time care.  What's more, many adults with autism would prefer to live outside their parents' home (and our son could, potentially, be one of them).

Where are your thoughts on this question?  Are you thinking ahead to an independent living situation for your child?  A group home?  Or do you have a different long term plan in mind?

More About Planning for Adults with Autism


Comments
January 1, 2011 at 11:17 pm
(1) Shai says:

My son, too, is high functioning and is verbal. He is 13 and we are working on self-care, but it is a long process.

My goal for him is to be as independant as possible. However, I know the reality is that he will probably never live on his own. I plan on him living with me for as long as it works for us.

We tend to go to the same places and many waitresses and some store managers/workers know him and are very welcoming. We work on him being comfortable and knowing our community.

He currently attends a non-public school for kids with developmental delays. Our goal is for him to attend a SDC Life Skills class at the public high school.

January 1, 2011 at 11:25 pm
(2) Catherine Speed says:

My daughter is not autistic but has FASD. She moved out last spring. It was hard for her to go but she would not follow our rules and was very aggressive towards my husband and I. She wanted her independence and fought us for it, every step of the way. She is in supervised housing and seems to enjoy her life day to day. I want so much more for her but that will have to do for now. One day at a time is all I can say.

January 2, 2011 at 12:48 am
(3) Sandy says:

My son is a few years younger than 14. Probably no one in our small town knows who he is and I have spent little time doing that because if in the future if he doesn’t live at home, he wouldn’t be living in this town.
When he was 3, I’d never had thought he’d ever be in an inclusion class setting. When he was 6 I’d had never thought he’d know what bus stop was his. At any given age I’m always wondering when he’ll ever finally fall asleep.
I have not given much thought to the future as to where he might live. That kind of goes with the what if’s. What if he can live on his own, what if he cant… I wont know until he get’s there. All I can do is work our way to getting him where he’ll be at his best and know most kids move out but some kids always stay, no matter who they are.

January 2, 2011 at 1:12 am
(4) Anne McElroy Dachel says:

The issue of support and care for autistic adults is gaining more and more attention in the press.
Adults with autism face many struggles http://abclocal.go.com/kabc/story?section=news/health&id=7870808

Program helps autistics aging out of school
http://www.necn.com/12/31/10/Program-helps-autistics-aging-out-of-sch/landing_health.html?&blockID=3&apID=1a638d99bd144459a4c3b5d18f7f4656

Health officials now admit that all the autism everywhere hasn’t always been around, unrecognized. The epidemic increase is real and it strikes one percent of kids. No one has ever found a comparable rate among adults. It’s now accepted that 80 percent of autistic Americans are under the age of 21. While some of us have children with high functioning autism or Asperger’s, countless thousands of affected children are severely disabled and in need of constant care and supervision.

Your son, like mine, has excellent potential for living independently as an adult. What needs to be addressed is what the future holds for the rest of the autism community. Health officials have never shown any real concern over autism. The Centers for Disease Control and Prevention has never called autism a crisis. EVER. Officials refuse to treat this as a health care emergency. We have almost 800,000 children with autism in the U.S. and no one is making plans for how we’ll provide for them as adults.

Your son and mine have options. Many parents see nothing ahead for their kids and they’re frightened.

When is this country going to wake up to what is appropriately called an approaching tsunami? When are officials going to start asking about how we’ll provide for a generation of autistic adults?

Anne Dachel
Media editor: Age of Autism

January 2, 2011 at 3:58 am
(5) Sandy says:

There’s an estimated 6.2 to 7.5 million people in the United States have mental retardation which is well above that 1.5 million said to have autism. Families have had disabled children become adults for generations. Do parents really want the government to take care of our kids, instead of us? According to what does 3 percent of autistic adults live independently and 6 percent hold paid, full-time jobs?

What’s frightening is that, without a source and to be constantly told about a tsunami which is not at all an appropriate way to speak about people, let alone my child included in that term. That doesn’t at all provide constructive hope. All that offers is pending doom.

January 2, 2011 at 5:12 am
(6) Melinda says:

My husband is on the spectrum, and I sometimes wonder if he could function without me. He does his best, but he has his troubles. Social engagements are the worst, going shopping is difficult, and any break in routine is a nightmare. Imagine a 6 foot tall, 260 pound man having a meltdown. I’ve learned to get out of the way and I try not to give him any surprises or change much in his routine.
Our son has autism, and he will still be living with us, unless he is able to live on his own (you never know, as he is only 7 right now). We live like we’re dirt poor right now just because we put almost all of our money into an account for him. We don’t have any “extras” other than the internet (no cable/satellite, long distance on our phone, just 1 cell phone, 1 car, 1 pair of shoes each- no high heels or anything “dressy”, no going out to eat, wearing clothes from discount stores…) We drive a 17 year old car just to keep from having to pay car payments and higher monthly insurance bills. Everything we don’t need goes to him. With that, his college fund, and our life insurance, we feel better knowing that if something were to happen to us, he should be OK. If he can’t live on his own and we’re no longer here on Earth, my husband comes from a large family (he’s the oldest of 10) and hopefully he will be with one of them. But as I said, he’s only 7 right now, and he may be able to care for himself as an adult. But as far as the extras that many people think they couldn’t do without- it’s amazing what you don’t need. And when it comes to my son, I’ll give up anything and everything to make sure he will be OK. We knew when he was just a toddler that it was a very real possibility that he will be living with us well into adulthood. We’re OK with that. We can’t have any more children, so having our one and only around the house is perfectly fine with us.

January 2, 2011 at 7:57 am
(7) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

As a disability advocate, and an autistic grad student, I’ve been looking at these options for pretty much my entire life, having been faced with the possibilities of a group home or intermediate care facility for myself. Overall, they tend to be unacceptable, and in long-term residential facilities for the disabled (institutions, group homes, nursing homes, etc), over 85% of abuses go unreported each and every day. Of the 15% or less that do get reported, most of them end in nothing more than a slap on the wrist for the offender, or worse, the victim can get blamed. Some places are better than others, but ultimately, the only real solution is to totally overhaul Medicaid, state by state, and eradicate the institutional bias. Create a state equivalent of Money Follows the Person (which I’m working on in New York), and use that to fund having people live with supports in their own communities. New York, just as an example, spends $4,556 PER PERSON PER DAY on keeping people institutionalized long-term. That’s around $1.7 MILLION PER PERSON PER YEAR. In this state, for someone with serious medical or supervisory needs, they could easily provide community-based living and supports for, at most, $170,000-200,000 per person per year, and that’s for the MOST INTENSIVE NEEDS POSSIBLE WITHOUT REQUIRING HOSPITALIZATION.

January 2, 2011 at 8:06 am
(8) autism says:

Re your comment, Sandy, just wanted to note that we didn’t start out planning to introduce Tom to members of the community as a tool for building independence: it just kinda happened.

We go to the same diner often, and folks got to know him (plus the owner’s granddaughter is in my daughter’s class, etc.).

Same for the bowling: I signed the kids up for the candlepin bowling league, which is tiny – and we (and other parents) helped their kids build skills. Oddly, there were 3 boys of the same age with similar issues – and ours was the only one with an identified dx!

Same for library: we go there a lot, and we homeschool, so it just became a normal kind of interaction (we’ve been pushing him to bring his own books up to the counter and check them out, and of course the librarians are happy to respond!). My husband does some work for them, too, and Tom often comes along and explores the stacks.

It’s only in the last couple of years that I’ve realized how successful this has been for Tom, and am pushing with a motive in mind. We’ve even, as I say, been successful in making music directors/teachers aware of Tom’s talent (and they’ve included him in programs because of his talent), EVEN as a homeschooled, autistic clarinet player!

Whether he stays here forever or not, I can’t imagine that feeling at home in a community could possibly hurt anyone.

Lisa

January 2, 2011 at 8:12 am
(9) autism says:

Anne and Marc – I tried hard in my post to clarify that I am well aware that my son is higher functioning (though not really an Aspie), and that that makes a HUGE difference in decision making. And of course you’re both quite right that services, supports and legal watchdogging is nowhere near where it should be.

In our community, there’s an organization specifically geared to helping seniors “age in place.” It’s mostly volunteer, and it pulls together a wide range of services such as transportation, shopping, home repair, tax advice, etc. I wonder whether such an organization could be expanded to serve adults who are living independently but have developmental issues? Something I should probably look into!

As regards the population of people who cannot live independently and may not be fully capable of expressing their wants, needs, or even abuses – THAT is where I think we are really in trouble. Whether Anne’s numbers are accurate or not, and whether there’s a tsunami or not, we have a significant population of people (and always have had) who need, deserve, and generally do not have the homes they need.

Lisa

January 2, 2011 at 8:40 am
(10) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

I already gave you the facts, and among them is the fact that even for people who need full-time care, it costs less to provide that in the community than to warehouse them in group homes and institutions, and provides a higher quality of life and quality of care at the same time. Given that, there is no reason to NOT go with that model as a matter of course, unless the individual clearly and strongly insists on an alternative.

January 2, 2011 at 9:06 am
(11) autism says:

Marc – could you say more about the kinds of community supports and programs available when “money follows the person?” For example, are there models of states or communities where supports are available and well-managed, so that families or individuals with autism can tap in and receive the level of help they need day to day?

Lisa

January 2, 2011 at 9:31 am
(12) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

The whole point of it is that there’s no “model” or one-size-fits-all setup. It’s all based on customization of services and supports to meet individualized needs. Money Follows the Person is a federal program, with fairly limited funding. If Medicaid’s default funding mechanism were to be altered to reflect the concept behind MFP, it would be similar to what’s known as “self-determination”, in which the state provides a budget to be used on living arrangements, services, and so on, with someone being appointed to oversee the signing of checks from the state and the disabled person (or a legal guardian/financial conservator) having right-to-hire and right-to-fire, and acting as the client and employer (the state would only be acting as payroll). If you want to look for it, just search for “community-based supported living”, or “self-determination and disability”, and you should be able to find more information on the subject.

January 2, 2011 at 10:59 am
(13) Joanna says:

I have a daughter who is 8 with high functioning Autism. My husband and I talk about this a where she will live after we die and and decided that we are purchasing a house asap that is larger than our current starter home that she will live in when she is older. we will give it to one of our other daughters with the knowledge that my daughter with Autism is supposed to live there.

My husband and I are in our mid thirties and this is a concern we have always had.

January 2, 2011 at 11:18 am
(14) Anne McElroy Dachel says:

Regarding the approaching “autism tsunami,” my source for this is one of the top experts in the country, Dr. Thomas Insel. He’s the director of the National Institute of Mental Health (run by the National Institutes of Health) and he’s the chairman of the Interagency Autism Coordinating Committee. He periodically reports to Congress on the progress the IACC is making with autism.

Last spring Insel gave an hour and a half talk at NIH on what scientists now know about autism.
https://webmeeting.nih.gov/p53171631/
He said, “If you look at those numbers, the increase and recognize how many of those kids will become adults, we …also need to be thinking about how we prepare the nation for a million people who may need significant amounts of services as they are no longer cared for by their parents or as their parents are no longer around.”

Insel made what to me was the stunning announcement that there are about 700,000 children in this country with autism. Furthermore he added, “Eighty percent of the people with a diagnosis of autism [in the U.S.] are under the age of eighteen.” Insel described it as “a huge wave that is moving through the system.”

This should have drawn national attention. This should have gotten the attention of Congress. Sadly, Insel’s words at NIH didn’t make the news.

Anne Dachel
Age of Autism

January 2, 2011 at 11:55 am
(15) Malia says:

Lisa – Re your comment No. 8. I really applaud what you have done in regards to “community building” for Tom. IF I do have one regret, I think it is that we were unable to bring about a similar situation here for out son. We are encouraged, however, that he does seem to be making his own social way at little better right now and is perhaps finding some good friends out there who might be honest and upstanding and caring enough to really help him if something happened to us… so, perhaps life does somehow find a way for each of us.

I agree with Anne and Marc. There are a large, large number of young adults poised to move into a care system that is, at the current time, completely inadequate and based on principals that were designed to serve a much smaller population of disabled persons… and that, upon assessment, didn’t do that very well either. Regardless of whether or not you believe the relative incidence of autism has increased dramatically over historical rates, there can be no argument that the rate of diagnosis of this autism as a diability has dramatically increased in the last 40 years. In addition, the general population of North America has also increased dramatically over that time period. Institutions were yesteryear’s attempted solution. In part, how society views the needs of peoples IS what determines how it administers their care. The concept of community supported living is as much a representative of changing societal attitudes regarding disabled persons as it is an indication of anything else. I, for one, support it.

Lisa, that you have been able to create an atmosphere where the idea of friendly community support for Tom is thriving is an accomplishment that should be long and loudly applauded!!

January 2, 2011 at 12:30 pm
(16) Sandy says:

Lisa, mentioning not bringing my child so much into the community was just simply something that wasn’t my focus, or helped to decide his future. We do things more practical like go to different grocery stores, how to folow a list and how to manage the money we brought with for this trip and not buy impulsively. The thought never actually crossed my mind for him to build a relationship with any of those people who provide services like a store or a waiter. But Lisa, don’t you just wonder about that person who mention that residential place, did they see something in your son that maybe you don’t? Or was it generated by the idea that all kids should move out so parents can more enjoy their twilight years,without kids? In all the years I’ve been reading, I’d think your son has progressed so well and I just wonder if that person even seen that progress to think maybe one day he could live maybe assisted living, more so than residential?
I have an adult niece and nephew still at home, being supported by their parents. My brother lived with my dad until he was 30. Whole generations live in the same house. Because we have children with autism, this makes us so different than anyone else who might have a kid who lives at home?

January 2, 2011 at 12:31 pm
(17) Sandy says:

Maybe Anne Dachel would like to share her experience since at least one of her children is an adult. What choices did she make concerning where that child lives? The dreaded idea of a tsunami and the government is only going to result in more built institutions for them, which of course is not the wanted answer. An example of an autism tsunami will only put more fear into the public and make people think more taxes and an already failing medicaid and social security will surely bankrupt this country. Scare tactics will only back fire. The government has already extended the age of insurance coverage for kids who become adults. The focus should be more service providers with in therapies for those adults, not sure that ABA would be appropriate but that would be an example. But the fact is many disabled people who turn adults cant live on their own, and it’s always been something parents have dealt with for generations regardless of some tsunami, which leads the public to believe 90 percent of those diagnosed with autism have no chance to growing up to being functional adults. I guess Temple Grandin is in that 3 percent which makes that even more amazing considering that time period when there was little interventions offered.

January 2, 2011 at 12:45 pm
(18) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

First off, that 3% figure is probably unverified, without actual research or data to back it. If there is actual support for it, I would like to see the original source of this claim to produce their evidence for making such an outrageous claim. Second, in this economy, plenty of people in their 40s and 50s are ending up permanently out of work, including heads of households, hedge fund managers, former CEOs, and other people who should have no trouble keeping a job and getting an excellent salary with enviable benefits. If THEY can’t find work, despite their storied resumes, and people with Master’s degrees are applying to work at fast food joints, what makes you think your kids are so special that they’ll be able to get work? Use a bit of common sense here. Finally, NOBODY lives completely independently in this society. How many neurotypical men, or women for that matter, are utterly hopeless at cooking, or cleaning, or with other domestic chores? Don’t even bother lying, because there’s more out there than you’re willing to admit. That’s how housekeepers stay in business. How many of you are able to fix your own plumbing when something goes wrong with it, or repair your own electronics, or do other forms of household maintenance without calling in and paying a handyman/professional to do it for you? Those could all be considered part of living independently.

January 2, 2011 at 12:48 pm
(19) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

Oh, and lest I forget, prepackaged craparoni doesn’t count as cooking.

January 2, 2011 at 1:05 pm
(20) Sandy says:

Marc~ Without a source for that 3 percent, I’ll assume it’s another scare tactic. If the autism numbers is hard to be accurate, and if that ‘tsunami’ hasn’t ‘hit’ yet, how can 3 percent be even close to accurate?

Very good point, nobody does lives completely independently in this society.

January 2, 2011 at 1:29 pm
(21) autism says:

Sandy – I don’t think that building relationships with community members is impractical, nor do I think it’s enough in itself. Of COURSE (as I mentioned in my blog) we teach Tom (and Sara!) how to wash, dry, fold and put away clothes; pay for items and check out books; shop at the grocery store with a list; cook/prepare meals. My goodness, I don’t think relationships and skill building are mutually exclusive!

I DO think that people IN the community are – in general – more likely to be understanding and helpful when they’re assisting someone they’ve known for years and watched as they’ve grown up than when they’re serving a complete stranger with odd behaviors.

As regards the issue of whether the acquaintance “sees something that we don’t,” I can tell you that she sees a teenager who is very young and shy for his age. She sees a 14 year old who is happy to visit the library with mom and dad, and who still enjoys reading picture books (as well as age appropriate materials). In other words, she sees a 14 year old with high functioning autism.

What she doesn’t see, because she sees him for a few minutes, more or less monthly, in just one context, is what he’s able to do elsewhere, with other people, and couldn’t do last year.

Does that mean Tom will want to or be able to live independently, with support, when he’s 25? I haven’t the slightest idea. The best we can do is to provide him skills, support, encouragement and challenge – and help him to find his way. As we do for his sister, and as any parent would do for their child.

BTW, I think the idea of providing people-centered community-based services is FABulous. Not quite sure how it works (where the $ comes from, where you find the services, how they’re accessed/paid for), but am intrigued!

Lisa

January 2, 2011 at 1:30 pm
(22) autism says:

Malia – thanks!! I am absolutely certain this would NOT have happened in the suburbs where we’ve always lived up until three years ago. Moving to a smaller community has made all the difference to each member of our family. We didn’t really make the move on Tom’s behalf (except relative to homeschooling laws) – but it’s been a good one for all of us.

Lisa

January 2, 2011 at 1:36 pm
(23) Malia says:

Arguing over the precise numbers or whether it represents a “tsunami” is completely unproductive and essentially irrelevant.

The issue is how to incorporate different levels of needed care for a significant number of people who cannot absolutely care for themselves or whose family cannot absolutely care them either (for a variety of different reasons) into a society humanely and with the minimum amount of potential for abuse. The numbers of such severely disabled persons have gone up… if only because the size of the general population has increased significantly and the ways and means society has chosen to look after them in the past haven’t kept adequate pace iwth the numbers.

Caring for disabled persons by society can be accomplished in several different ways. Several different historical models of how different societies have done so exist; however, the onus for how good that care ultimately is remains at the most local of levels – that of the “heart” and integrity of the careperson (whether that person is employed by the state or the community or even if they are a parent or a family member). Unfortunately, abuses of persons with disabilities can and do take place some of the time in ALL types of care “models.” Parents sometimes abuse their children, family members sometimes abuse their vulnerable relatives, friends sometimes take advantage of friends, strangers often take advantage of strangers, and institutions, even at their best, crimp on services when finances get tight.

IMO, the relevant question here is not whether or not this groups represents this percent or that percent of anything. They require care and the quality of that care should not and cannot solved by ignoring them… just because their situation doesn’t provide hopefulness to those not as disabled as they are.

January 2, 2011 at 1:44 pm
(24) Malia says:

Oops – wrong word selection – last sentence should end with “as disadvantaged as they are.”

January 2, 2011 at 1:51 pm
(25) Sandy says:

No one is arguing the precise numbers or whether it represents a tsunami, is our opinions and thoughts and yes the precise numbers are relevant when a few think there is a precise number and the manner of which it is used.
The last thing I want is the public viewing autism as a tsunami and that’s the first thing they think of when they meet my under-aged child and dread him becoming an adult and someone they’re taxes will pay for. The last thing I want on my mind is the what if my child makes that 3 percent and obviously some where that chance of not being in that percentage is very low. That impact is very real when statements as such are presented within the media and it in no way paves the way to find an answer for all with autism, child or adult.
As I stated prior, there is an estimated 6.2 to 7.5 million people in the United States have mental retardation, that is the start of where to look for an answer. Obviously 7.5 million found a way, so can those who have autism.

January 2, 2011 at 2:01 pm
(26) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

As odd as this may sound, the Middle Ages simultaneously provided both the best AND the worst models for working with people with severe impairments. Ever hear the saying “It takes a village”? There’s your answer! It’s not about getting a “program”, or a “system”, or a “mechanism” (with the exception of a funding mechanism, but I already ranted about that in another comment), but about living in a community that acts like a community, looks out for their own, and doesn’t see “autism” or “mental retardation” or “Down’s Syndrome”, but just sees “my neighbor from down the street”. You can go on about whatever “treatment” or “therapy” you like, and it won’t do a bit of good if the villagers grab their pitchforks and torches and form an angry mob. At the same time, if they’ve come to know and love your “kids”, they’ll gladly take up those same pitchforks and torches to drive off anyone who would dare threaten or harm them. You won’t always find yourself just living in such a place though. If that’s the case, CREATE a community where you live. MAKE a family, bound by ties that have nothing to do with blood, because THEY are the people who you should be able to count on when you’re gone. Every time I go to a committee meeting or conference, I hear parents ask that question “What happens when I’m gone?” I tell them, “The government lacks the means to help. All you can do is make a village.”

January 2, 2011 at 2:07 pm
(27) Sandy says:

Lisa, I am not being critical of what you have done. If your child can build those personal relationships, way to go but for those with a real social deficit, it’s much harder to achieve. When I said more practical I was meaning my child, not yours. In the small town where I live, the same people are never working when we go and by the time he’s an adult and maybe able to do it on his own, those people would probably not be working at the same place, or retired. My focus is more on serving a complete stranger with odd behaviors. My son more than anything is going to have to cope with that within an ever changing world around him.

January 2, 2011 at 2:18 pm
(28) Sandy says:

When one of my nephews became disabled when he was an adult, that is sort of what my sister did, created that village (support team) for him but much of it revolves around family and extended family. It doesn’t really matter the type of disability, the general public by nature when meeting such a person just doesn’t extend they’re hand to offer help or compassion. When my nephew lived in an apartment that was assisted living, the other typical residents didn’t like him at all, or the other disabled person who lived there too.
Now where I live, there isn’t one apartment complex. If I was to attempt to build a village, I would then have to assume my son would always live here with us or pick a town and start building that village there. The thing is, my son has his heart on living either in California or Japan. So my idea is to build that village within my son, to take with him where ever he goes.

January 2, 2011 at 2:29 pm
(29) C. S. Wyatt says:

The last survey data I located indicated that only 17 percent of adults over 18 with an ASD held any form of employment. That was a NHS survey (U.K.). My own data (now about two years old) found a lower percentage had full-time employment within a self-selected sample of college-educated individuals with ASDs. I’d have to check, but the percentage was small (48 adults with diagnoses were interviewed at that time).

I don’t have full-time employment, and I know several other Ph.D. researchers with ASDs also out of work. But, that is not necessarily because of the ASDs — the education and research market has been crushed during the recession due to state and federal budget cuts affecting universities.

I have to assume, based on an 80%+ unemployment rate, that the autism spectrum disorders play a significant role in the career situation. I wonder of the 15-17% with jobs, how many are (like me) “underemployed” and therefore financially incapable of “independent living.”

Without my wife and family, I have no idea what would happen to my living situation. Realistically, it wouldn’t be good…

January 2, 2011 at 2:36 pm
(30) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

Sandy, if he ends up in Japan, it could go one of two ways. Even if he learns the language, their culture is fairly xenophobic (though usually not violent about it), and he’s guaranteed to never be able to really assimilate. When I said “make a village”, though, I never said that it would be easy, or that they’d have that perfect fit somewhere. In fact, in my experience, the most likely way for us autistics to find those connections is amongst our fellow societal rejects, or as they put it in Rent, “La vie Boheme”. Don’t take that to mean that your kid’s most likely to fit in with druggies and burnouts, or anything like that. Rather, consider more the fact that we tend to see the world and everything in it from an angle which tends to garner reactions ranging everywhere from confusion, to fear, to irritation, to anger, from typical people. Simultaneously, that same quirk which cripples us with typical social interactions can open the gates to more artistically-minded communities, where perhaps the scenery’s not so great, and the property values are lower, but the people are far more interesting and there’s never a dull moment. Furthermore, if your kid has an interest in something such as art, music, or poetry, there is most likely an active community for it in your area, which you can get them involved in, and which could give them that village that I keep talking about. This goes double for poetry communities, since they tend to be just local people who take turns featuring, write for the love of the art, and go to the open mics for the sake of being applauded for doing something they love. Autistic or no, once that feeling sinks in, they’ll be hooked.

January 2, 2011 at 4:02 pm
(31) AutismNewsBeat says:

When is this country going to wake up to what is appropriately called an approaching tsunami?

Since there are no good data pointing to an increase in the incidence of autism, the answer to your question is “not anytime soon.”

It really doesn’t matter what Tom Insel says, until he uses empirical evidence to back up his words. But he has none. Neither do you, Anne.

January 2, 2011 at 4:42 pm
(32) autism says:

Tom was the ONLY kid with autism who’d ever been in band when he was in school in the Philadelphia suburbs. He’s still the ONLY kid with autism in the middle school band in our smaller town – AND the only homeschooled kid. No one offered us the opportunity, but we asked for it and supported it with offers of help in connecting with Tom… I learned clarinet along with Tom when he was tiny, and even shadowed him for the first year of band at school because the school wouldn’t/couldn’t provide a before-school aide (who could read music!).

The band directors at the schools are also leaders of the town band, and involved with the musical theater – so there’s an excellent opportunity for Tom to play in both venues.

We also sent him to the band camp run by the education director for our regional symphony – and George now knows Tom well. It was a bit rocky when he started, but after 3 years of steady improvement, George was confident enough to say “yes” when we asked whether Tom could be part of a “junior” version of the Symphony’s youth ensemble.

After several years, he really needs very little support. But more significantly, IMO, the band director offered him a solo in the big Christmas concert – NOT to be a nice guy, or to do a kind thing for the disabled kid, but because Tom is a hell of a clarinetist and, weirdly, very few kids wanted the opportunity.

At the concert, several parents we knew – who knew Tom only slightly – saw him for the first time NOT as a shy, autistic kid, but as one of only three soloists in a concert featuring 120 middle school musicians. The scales fell from their eyes, and they saw him in a new light. As a result, one of parents introduced my husband to the band leader at the high school, saying “this is the kid who soloed with the jazz band!”

Yup.

January 2, 2011 at 4:46 pm
(33) Amalia Starr says:

I have a thirty-seven year old son who has autism. He is high functioning in some areas and in other areas he has great difficulty. He is verbal, but doesn’t always say what he means or means what he says. He too is clearly different. He also has intractable epilepsy and severe learning disorders. All the professionals who worked with my son told us he would never be able to live alone. They were wrong. My son has been living on his own for the past thirteen years, enjoying his independence. What I have learned along the way is as parents we need to be brave and courageous as we help out children grow and develop to their maximum level of independence. Whatever works best for your child is my motto. I also know that as parents we must be careful to not allow our own fears to get in the way. Without risks your children will not fully grow and develop said Anna, a women who has worked with autistic adults for the past thirty-one years. I couldn’t agree more. My son is learning life by living life. How else does one learn, but through their own experiences. Our children are all different and I am sure as parents you will make the right decision for your child if you listen to your heart.

January 2, 2011 at 5:08 pm
(34) AutismNewsBeat says:

I also know that as parents we must be careful to not allow our own fears to get in the way.

Thank you, Amalia! This is why I have so little patience for “anti-vaccine and autism-tsunami” crowd. These kids are not damaged goods who need to be fixed. I have found that the best antidote against fear is to focus on facts, and a healthy skepticism.

January 2, 2011 at 5:15 pm
(35) autism says:

On the other hand, ANB, better options and forward thinking for adults with developmental challenges is in everyone’s best interest.

Lisa

January 2, 2011 at 6:01 pm
(36) AutismNewsBeat says:

Not sure I get your point, Lisa. Are you saying we can’t have “forward thinking” without blatant fear mongering? Can we at least agree that it is better to act on facts than fears?

January 2, 2011 at 6:10 pm
(37) autism says:

Of course, ANB. But I believe it is fair to say that there are a great many people with autism spectrum diagnoses about to enter adulthood – whether you call it a “tsunami” or not, and whether you believe in an autism epidemic or not.

These are people who have been supported by the IDEA law in the United States since they were small. Many have been accommodated by a whole slew of special supports throughout their growing up years. Their families are accustomed to accessing supports and programs, and to having school-based therapies and programs available.

Now, they are entering adulthood, and those supports, therapies and programs will go away.

I see nothing wrong with looking ahead on behalf of this group, bubble, wave, or whatever you want to call it – and planning for their support in the community.

In fact, it seems like a darned good idea to me. Not to you?

Lisa

January 2, 2011 at 9:10 pm
(38) Sandy says:

Actually, if the therapy is covered under insurance, once a child turns adult age that service could still continue. It’s also difficult to compare an academic settings to ‘real’ life and what those services might be once the child is out of the school system. You know when the child is at home, school generally isn’t in the home. That’s the problem with so many relying on the school system and why there has been for years the war of just who should cover these children? Is autism an educational disorder or medical? Insurances and schools never should had had the battle of claiming the other was responsibile. Now if ABA wasn’t effective when the person was a child and in school, chances are it’s not going to be effective once that person get’s older and into adult age. I’m sure ABA could morph to accommodate those adults and they will have to if the tsunami hits and all with autism are adults, not children.
It all depends on what one needs and considers as therapy for their adult child. There are PCA’s who also service adults, not just children. There is respite for adults, too. When the tsunami hits, all those adults will get on SSI and medicaid and they will then pay for PCA’s and living assistance, that is of course if politically they don’t do away with those 2 programs as many are striving to do away with and that’s even before that tsunami wave.

January 2, 2011 at 9:10 pm
(39) Emily Tuck says:

My husband and I (63 and 45 respectively) are too old to think it feasible to care for our non-verbal autistic son, now 5 and 50 lbs, in his adulthood. I’ve had cancer and I worry all the time about what will happen to my son after we die.

January 2, 2011 at 9:50 pm
(40) Anne McElroy Dachel says:

“It really doesn’t matter what Tom Insel says, until he uses empirical evidence to back up his words. But he has none. Neither do you, Anne.”

AutismNewsBeat seems to say that Insel, one of the top autism experts in the U.S. is making baseless claims about the coming of the wave of adults with autism.

This is a subject I’ve written on a number of times. It’s going to be more and more an issue as the autism generation ages into adulthood.

Here are two recent examples.

ABC 7 in Los Angeles: Adults with autism face many struggles http://abclocal.go.com/kabc/story?section=news/health&id=7870808

Overland MO: Program helps autistics aging out of school

http://www.necn.com/12/31/10/Program-helps-autistics-aging-out-of-sch/landing_health.html?&blockID=3&apID=1a638d99bd144459a4c3b5d18f7f4656

If AutismNewsBeat thinks that this is not going to be an economical disaster for America, maybe he/she would care to show us where all the autistic adults are living today. I work with a number of severely autistic teenagers. Their symptoms show no signs of disappearing. I can image that in 20 years they’ll have the same limitations that they display today. It should be easy to pick at autistic adults, just as it’s easy to recognize children with autism. IF ONE PERCENT OF ADULTS HAD AUTISM, I’M SURE THE CDC WOULD BE TALKING ABOUT THEM ON NATIONAL NEWS SHOWS.

They never do that. The question is …Where are all the autistic adults?

Anne Dachel

Age of Autism

January 2, 2011 at 9:50 pm
(41) Anne McElroy Dachel says:

Thomas Insel also spoke at MIT in 2009. This is what he said about the explosion in the autism rate:

http://mitworld.mit.edu/video/756

“In the 1980s,…I remember having to look far and wide to actually find a child with autism.”

“I’d never seen any children with autism through all of my training.”

“I didn’t actually know anyone that I trained with who’d actually seen a child with autism.”

He said he’d seen the data from PEDIATRICS magazine putting the current rate at one in 90, but he admitted, “I’m not sure what to do with these data.”

“I don’t know of any data quite like this over a 20 year period which shows this striking increase.”

Insel said we don’t know what’s driving this. We know it’s not because of people who were labeled something else. He said it’s not diagnostic substitution.

It sounded like he was talking about a real emergency. A shocking number of our children now have a disorder that was previously unknown. Insel can’t tell us why and there’s no way to prevent more children from becoming victims. Amazingly, Insel isn’t worried that the one in 90 rate might get worse. What if it’s one 50 in the next two years?

Insel said we need to understand that this is a “synaptic disorder” (relating to or involving a junction between nerve cells).

“I said before this isn’t just genetics… There have to be environmental factors.”

Anne Dachel
Age of Autism

January 2, 2011 at 10:00 pm
(42) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

More sensationalism, and more defensive posturing, but NO EMPIRICAL EVIDENCE? Wow, I’m REALLY impressed, Anne! You’ve really convinced me with all those empty and meaningless words, especially given that the DSM has no criteria for diagnosing adults, that every single criterion for the autism spectrum has an age indicator counted either in months or maxing out at less than ten years old, and that the exact label given will change depending on which shrink gives the diagnosis. Oh, and if you say “you’re too high-functioning to be included in this”, I ask you, what is the operational definition for “high functioning”? Do you even know what the term “operational definition” means? Do you have any understanding of the process that is the scientific method, and science itself, or are you too busy staring at a certain blonde’s “enhancements”?

January 2, 2011 at 10:33 pm
(43) Sandy says:

Anything could and will be an economical disaster for America, if one expects the government to pay for it all.

There 6.2 to 7.5 million people in the United States have mental retardation. Their symptoms show no signs of disappearing either but we have yet to see any disaster over that number. Seems a tsunami already hit, and America is still here.

That’s right about where are those adults with autism? If no one can find them, then just where did that 3 percent of autistic adults live independently and 6 percent hold paid, full-time jobs when no one can find adults with autism? It cant be both ways.

January 2, 2011 at 10:40 pm
(44) autism says:

This thread is only a day old, and already the comments are personal attacks. I will leave the thread open tonight, but will end it tomorrow morning if there are more personal comments on it.

Lisa

January 2, 2011 at 10:49 pm
(45) Sandy says:

Really, and you didn’t notice that earlier? Right around comments in the 20′s? Maybe it would be more helpful if you let in just who and what you consider attacks and if it goes for everyone or only a select few.

January 2, 2011 at 11:31 pm
(46) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

I saw few, if any, personal attacks in the last few comments. However, I don’t include in “personal attacks” matters such as insisting that certain persons provide empirical evidence to support wild and outrageous claims, nor do I include comments that suggest that if such outrageous claims are unsupported, that they should not be stated in a manner where one is acting as though one has authority to claim them as fact. As far as I’m concerned, neither of those are personal attacks, and neither is asking a series of questions regarding the claimant’s knowledge base or potential distractions.

January 2, 2011 at 11:33 pm
(47) zusia says:

Anne– For Insel to make such broad claims on the basis of his limited personal experience is criminal: he takes advantage of the naive and uneducated. Unfortunately, since you’re not autistic, you’re not privy to the countless private autism boards brimming over with adults on the spectrum, and more being diagnosed every day. Some are employed but most, even those with college degrees, cannot support and care for themselves, unless they have family money or a network of family and friends who understand.
l
Autism runs through my family and in decades past, my great aunt and first cousins were diagnosed “developmentally delayed.” This was one of the many diagnoses that were applied to people with autism. If you were a member of adults with autism forums, you’d hear about the other types of diagnoses that were handed out in the 60′s, 70′s, 80′s. My husband’s brother is 57 and has never left the family home. Clearly he is autistic, but was probably considered “developmentally delayed” in school. He manages the house for the aging folks and will stay on in the residence after they pass. He’ll still need help and support but has learned enough over the years to manage.

My husband and I paid off our house several years ago so that our kids would always have a place. That’s just what his parents did so that their disabled son would be taken care of. This is what countless parents have done over the years. Those who haven’t been able to make such preparations have had their developmentally delayed children wind up in state homes or on the street. To say they don’t exist because Insel never ran across them is idiocy.

January 3, 2011 at 1:01 am
(48) Twyla says:

Marc Rosen, this is a personal attack: “Do you have any understanding of the process that is the scientific method, and science itself, or are you too busy staring at a certain blonde’s ‘enhancements’?” That goes way beyond stating your opinion on the subject, citing facts, or making an argument.

Zusia, I’m sure Anne is not saying that autism never existed before, but that it used to be much more rare than today — especially the severely affected. Those who are capable of blogging are certainly in a different place than many young people with autism today. And most parents I know report no history of autism in the extended family before this generation of children.

There is a lot of data supporting a very significant increase in autism. As Dr. Insel has said, “I would point you to three sources for information on questions of prevalence. There is HRSA, which has done phone surveys. There is CDC, which has been using basically the same methodology across all of these different cohorts focusing just on 8 year olds and using secondary data sources. And the third source is the California registry, the DDS data, which goes back to 1987 and has data from every year on children who were referred in for services. In which case, because it is a disability services registry, you are talking about children who are on the more severe end of the autism spectrum…” He says that factors such as change in diagnosis and ascertainment don’t explain away the “huge increase”.
http://www.ageofautism.com/2009/12/david-kirby-dr-insel-on-rising-asd-numbers-no-question-about-environmental-factors-.html

January 3, 2011 at 1:07 am
(49) Twyla says:

Dr. Insel does also talk about his personal experience. He says, “My personal sense, just from my clinical experience… when I was in training, I never saw a child with autism. So I went through four years of training as a psychiatrist, including a rotation – a long one – through a year of child psychiatry, and never saw a case. I got interested in autism through work I was doing in basic science research, and I wanted to see children with autism. I couldn’t find them. This was in the mid-1980s, and I had to find a specialty clinic at Children’s Hospital in Washington, and I got to see my first case there. And now I wouldn’t have to go any further than the block where I live to see kids with autism today. So if that’s not a change, I don’t know what is. On a personal experience basis, I don’t think that’s unusual. Most people who I’ve trained with would say much the same thing.” He is not making “broad claims” only based on his personal experience. He also reviews a lot of data and studies. But his personal experiences are certainly relevant.

I have heard many older special ed teachers say that 40 years ago their classes were primarily students with Downs and CP but very few with autism, while now students with autism are in the majority.

January 3, 2011 at 1:48 am
(50) zusia says:

Again, they existed, but some of you wear the same blinders as Insel. They were not in public schools because they were considered either mentally ill or mentally retarded and institutionalized. Statistics on mental retardation bear this out. Incidence of MR has decreased as incidence of autism has risen.

Schools didn’t begin assuming care and schooling of autistics and others with assumed cognitive difficulties, like Down Syndrome, until the 70′s, but it took a full decade for the tide to change from institutionalization to public education, even longer for those with health and behavioral issues. It wasn’t until the late 80′s that education for the cognitively impaired began developing, slowly, and then in the 90′s when the ADA was passed. Only the “high functioning” were in schools and like my cousins, they were called “developmentally delayed.” One of my cousins left school at age 12, in the late 60′s, because her needs weren’t served and she remained at home. Who knows how the schools recorded her attendance but they didn’t complain when she stopped going.

My neighbor has an adopted adult daughter who they always assumed had brain damage from an assumed birth trauma. A teacher I work with also has an adult daughter who has had multiple diagnoses but never autism. Both these mothers now know their children have autism, but it wasn’t clear to the professionals who first treated them in the 70s, because so little was known about autism. They just assumed everything was brain damage from birth. Even when I was a little kid the term “brain damage” was commonly used. That was a trend in medical thinking that was reversed once the scope of autism became better understood.

This is how it used to be. Why do you not understand this? Are you too young to remember what happened when Reagan cut funding for mental hospitals in the 80′s and most of them closed, spilling low functioning adults on the streets? Do you think they all had correct diagnosis back in the 80′s?

January 3, 2011 at 1:50 am
(51) Malia says:

Why is everyone so hung up on one word? I’m not a lover of fear mongering, but I don’t think the first post Anne made constituted fear-mongering. Can’t we just set aside the vaccine-antivaccine “sides” in order to discuss one thing? The numbers of people in North American society who will be requiring fairly intensive long-term care IS increasing (if only because the general population has been increasing) and simply saying that people handled in the past isn’t going to solve that issue adequately for the future. While certainly there are a large number of people with autism and families who can handle everything just peachy without much help from anyone else at all (and that’s great); but there are a number of others who simply can’t… and they deserve some attention without their advocates continually being accused of fear-mongering for merely stating that they exist. Not all of the problems are just with autism, societal issues such as drinking, domestic violence, incest, etc. play roles in creating more situations where in-family long-term care is not a good option. However, these individuals should not just be left with knowingly abusive and overcrowded state-run institutions as their only option either. Programs such as “Money Follows the Person” help funding issues and are more economic in many respects in that taxpayer takes a step back and only “writes the checks”… but the quality of care more depends on having someone dependable in the disabled person’s immediate circle of family or friends around to administer that care. What provisions should society make when the family or “community” in which a severely disabled person lives is truly “toxic” and no one can be found who can be relied on to look out for that person’s best interests?

January 3, 2011 at 2:22 am
(52) Twyla says:

I tried to post links to school statistics and to UC Davis studies in 2002 & 2009 showing the substantial increase in autism, but apparently my comment is being held up in the security. At any rate, we could argue all day about autism prevalence, and everyone can do their best to poke holes in any study, but bottom line there is data supporting Anne’s comments, and she is making the very good, important point that somehow our society is going to need to provide for a generation with a very high percentage of children with autism, who are currently growing into adults with autism — many of whom will not be able to live independently.

This is, of course, of tremendous concern to parents, who will someday no longer be here to care for our children.

It is interesting to hear what people are doing as individuals to plan for their children’s futures — children at many places on the spectrum. And to hear ideas on what government should be doing.

Lisa, it’s wonderful that your son plays the clarinet so well and is part of a youth symphony orchestra! And it’s wonderul that many in your community are familiar with him, that he has found some relationships and acceptance!

January 3, 2011 at 6:07 am
(53) Sandy says:

The one word is offensive, and when one person from AOA shows up and presents a bunch of info without sources and info from AOA, and then generalizes all with autism instead of speaking only about their own child (which they never did), when only a few made this anti vaccine and when others question it all (which they should) it’s called attacking, this is where it will always end.

This IS the autism community speaking out; we do not like what’s being said and presented of our children who have autism.

January 3, 2011 at 6:51 am
(54) autism says:

Sandy – please read Twyla’s comment, and understand, again, that I am NOT censoring anyone’s point of view. I am not, however, willing to allow individuals to specifically and intentionally insult one another on this blog.

Nothing that Anne has said on this thread is in any way deserving of nasty, personal comments. She has stated a point of view, and OF COURSE others are welcome to refute the point of view.

They are NOT welcome to toss nasty personal remarks at Anne.

I would also like to mention that I am NOT sitting at my computer monitoring your conversation every second of the day and night. I jump in when I see that the conversation is sliding into the nasty and personal, but it is perfectly possible that I was off feeding my kids, working on other projects, etc. for a period of time and did not see a series of interactions until hours after they were posted.

Thank you.

Lisa

January 3, 2011 at 7:00 am
(55) Sandy says:

Sorry, she stated more than just a point of view. If you see nothing wrong with starting out with “The epidemic increase is real and it strikes one percent of kids. No one has ever found a comparable rate among adults.” Or “When is this country going to wake up to what is appropriately called an approaching tsunami? When are officials going to start asking about how we’ll provide for a generation of autistic adults?” then maybe you need to broaden your view to be able to relate to how others perceive those sorts of beyond opinion statements.

January 3, 2011 at 7:54 am
(56) autism says:

Sandy, Anne is asking a political question. You are welcome to disagree. No one on this thread is welcome to attack Anne for stating a political position.

I’m going to end comments on this thread now. Please feel free to comment on future posts.

Lisa

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