I don't know if these comments are still read or posted but I need to vent about the topic.
Our kids are 11 and 6, both asd level 1. They both have the potential to be very "high functioning". But I don't know that I will EVER not worry about if/when they live independently on thier own. I have another daughter, 23, who is married and lives across the country and I talk to her twice a day, mostly bc we both love to chat- but she's still my child no matter how old she is. I like knowing she's ok twice a day.
I'm getting divorced. Dad doesn't have much interest in thier ddevelopmental issues and firmly believes everything is ok. The "marital home" used to be a duplex. Although it makes no sense financially, I think I'm going to keep the house, put it back to a duplex, build a self sustainable tiny home in the back yard and then-when they are each old enough, each kid can have an apartment and I will move into the tiny house outback. Thus giving them (the illusion of) an independent life.
Am I overprotective or doing what I think is best for then long term?

My oldest son, Anders, will be 52 next month. His first diagnosis was “mild” cerebral palsy at 20 months of age, then autism at age 4 after his younger brother, Conrad, was diagnosed with autism.

My grandmother made the appointment for Anders to be seen by a neurologist, when he was not walking at 18 months. He suffered severe head trauma (a cephalhematoma) at birth. Conrad had to be resuscitated at birth, and he had jaundice. Conrad should have been recognized as a child with kernicterus.

It was a nursery school teacher who recommended we have Conrad seen by a psychiatrist. She was a recent graduate of Cardinal Cushing College back in the 1960s, where they learned about autism. Our pediatrician, a 1940s graduate of Harvard, had insisted we should stop worrying.

At our local library I see books by Arnold Gesell going back to the 1920s that clearly define developmental milestones, even the “head lag” sign recently touted as a newly discovered warning sign for autism. Poor head control was a problem for Anders but not Conrad, whose motor milestones were even ahead of schedule. Conrad’s speech was markedly echolalic. He had perfect pitch and quickly learned all the popular songs on the radio.

Anders only had echolalic speech still at age 5, and after a brief trial in kindergarten we were told that public schools could not work with children who did not have normal speech. I am eternally grateful to the psychiatrist, Dr. Donald S. Gair, who admitted Anders to the children’s unit at the Massachusetts Mental Health Center. At that time there was only one other autistic child on the unit. The other children had other difficult behaviors that schools could not handle. Some had seizure disorders.

The wonderful special education teacher on the children’s unit (Ward Six) worked a miracle for Anders, and just before age 6 he began speaking normally. By age 7 we thought he had completely recovered. By age 17 we realized he would not go to college, and he was chronically coming to the attention of the police. We, the parents, were royally criticized for not being able to control our juvenile delinquent son.

Conrad died at age 31 in a group home of a prescribed overdose of Thorazine, 1500 mg per day. The psychiatrist should have been tried for murder. Anders now lives in a group home, where I continue to be royally criticized by the house director. I described his situation yesterday in a comment on Anne’s post on changes that are about to take place in Massachusetts.

Injuries at birth caused autism in my first two sons, which is disdainfully rejected by medical practitioners. I will continue to try to point out the damage caused by asphyxia at birth (to nuclei in the brainstem auditory pathway, and the basal ganglia). See the article by William Windle in the October 1969 issue of the Scientific American. I think the obstetric protocol for clamping the umbilical cord immediately after birth (since the mid 1980s) may be the cause of many cases of autism, all of whom will need lifelong care.

Hi Roger,

I understand where you are coming from. So glad you are feeling better and hsve good doctors on board. Is it a mito disease or dysfunction that they are considering? I, too am interested in your leucovorin treatment. Please feel free to answer Benedetta and elaborate on how it is helping you.

In Anne's defense, she is not ignoring you or any of the adults but trying her hardest to make the point that the media and big orgs taking in lots of money are stil playing the "better diagnosis" yet ignoring the epidemic numbers of children daily being diagnosed. My Meg is nonverbal, autoimmune and seizure dx (yet 9 months now seizure free) and now an adult, soon done with school. There is no safe haven but home and I must work, so life is not easy for the many like us. Meg is the foreshadowing of the tsunami of kids coming so again, Anne is trying to draw attention to that emergency coming.

I am glad you and Martha are a part of our community.

What happened to the belief around here that autism is medical and can be treated?Maybe my opinion is tainted by the fact,I do have a type of autism that can be well treated.

Anne McElroy Dachel,you seem to completely ignore posts from like Martha above yours here,and it is hardly the first time.Just once I would like for you to admit there are seriously disabled,and sick,autistics out there in their 40s,and older,there are just a lot fewer of them than there are children and young adults.

Martha is right no one cares about these people,and you don't seem to either.The only ones that do care about them,are the families.There will never be a government investigation as to how many of these people there are,and how they live.Maybe your friend Sheryl Attkisson could do an investigative news story about this.

These people may not have exactly the same medical problems the kids do,but they are similar.I have said this before,and I will say it many times.I would be exactly where Martha's son or Kim's brother in law is,had I not lived with my mother until she died.As My mother and I spent many many years fighting know nothing and uncaring doctors,who kept spouting the same garbage about how it was all just autism,and there was nothing you could do about it.Now we know better.As you all know,I have spent the last five years getting medical tests and workups all over the country,and treating my cerebral folate deficiency was what allowed me to improve so I could live on my own after my mother died.I just came back from my first visit to Arkansas Children's yesterday.I now have two diagnoses Severe 5-MTHF Deficincy,childhood onset type,rather than newborn,and probable mitochondrial disease.I still need more tests for mito,but there is enough evidence to start me on the cocktail.I now have serious cardiovascular problems now from having my mito and high homocysteine untreated for so long.Treating my homocysteine when I did saved my life.

Who knows how many adults have died in homes and institutions from diseases we now know are associated with autism?My mother was unique and ahead of her time in keeping me out of homes and institutions.If more parents 40,50,60 years ago were like my mother we might not be asking if there are adults with medical problems we see in autism.Treatment and research would not be geared towards children,but spread out over the whole life span.

Residential "treatment" should only be a last resort after every possible biomedical cause has been completely examined.And then,only a temporary one.The conditions at these places are as bad as third world prisons.Autism families have no business joining up with groups that support the workers at such places.Instead families ought to be telling their stories of abuse and neglect and looking for other options.As moon batchelder says living with parents until the parents die is the best possible outcome.I do not believe there are any behavioral challenges that are too great to solve or control,even if it takes years to do so.Persons with intellectual disabilities are still not given enough training and support so they can live on their own.They can do so much more than society gives them credit for.

And Greg,sending someone with autism out on their own to attend a program is a big mistake.The mother,a therapist,or someone needs to be with them at all times.I could not travel on my own until I had been on the leucovorin a couple years.

As parents, t's important to have these discussions about 'Where will they live/ How will they contribute to society/work? What happens when we are no longer here?"

Choice and options are important - not all on the spectrum are the same as we all know. Also, every state has different systems and options.

No matter where you r child falls on the spectrum it's important to get Life Skills in their IEP so they can learn what they need to live as functionally independent as possible - of course that looks different for everyone!

That is why I co-wrote with my son Jeremy the book "A Full Life with Autism" (Macmillan 2012) - I researched all that was out there, and interviewed people and looked at new ideas and projects. I wrote about what they need to learn while still in school. Jeremy wrote what it was like transitioning to adulthood. Despite being able to type, he is still very impacted by sensori - motor challenges and needing supports .

You might find the book helpful. Tons of resources at end of each chapter and for all functioning levels of autism. There are no easy answers, and not all the answers, BUT it's a good starting point for thinking /planning on the future. Being empowered with knowledge will help you create or choose a path for your adult child. We wrote it to help people; we hope it helps all of you.

It's hard to think about this for almost all autism parents, even people with high-functioning children. Where will today's children with autism live out their lives. No one can show us the group homes with 40, 50, and 60 year olds with autism. That doesn't seem to bother anyone.

Last Feb a newspaper in CT had this headline: For CT Adults With Developmental Disabilities, Housing Help Unlikely Until Parents Die

http://newtownbee.com/news/0001/11/30/ct-adults-developmental-disabilities-housing-help/190448%20

This won't be happening JUST IN CT. This is the future as this generation of children enters adulthood. And I'm sure it won't just be housing that won't be there. It'll be daycare and services and job training. There will endless waiting lists. There are just too many people like this. Families will have to do more. BUT. . . when worn out parents are no longer able to care for their children, WHAT THEN?

Anne Dachel, Media editor: Age of Autism

this is one of my major concerns...now she is only 11 years old...homeschooled because she can't tolerate a classroom environment...unable to self calm...all the usual difficulties with social nuance and long-term memory retrieval (i.e. math facts etc.)
where will she live? when i'm not around...where will she get employment, given her difficulties...
she does like flying airplanes, so i will be helping her to get a small planes pilot license someday...perhaps that will be enough...
we who are raising even high-functioning autistic kids have far more fear of what failure to launch might mean for their future...and those of us already in our 60's must barter with whatever deity or destiny to allow us more time to be 'there' for our kids!

I agree with Greg. I don't think there's any way that many autistics would be able to support themselves earning enough money to live independently (and wouldn't be able to cope with the thousands of skills necessary to live alone). My daughter is good with the computer, and I've told her that ideally she might be able to work in computer programming. At this time, though, she is improving through our ESL work at home, but is still very low-verbal, and I doubt she'd be able to understand her job assignments or communicate with clients or employers if she were able to get a job. I told her that if she couldn't do that, she'd probably have to get a job at the supermarket bagging or shelving. She said she didn't want to do that, and I don't think she'd be able to do it eight hours a day, five days a week. And it would be hard, boring work. But she wants to be independent and expresses her dissatisfaction with me and our life here very frequently. She's fourteen now and has no friends, since she is so low-verbal.

Yesterday we worked on a Connect lesson on "I was reading when the phone rang" (past progressive interrupted by a simple past action after "when.") And it was COMPLETELY a new concept for her, since the vaccine encephalitis damaged the universal grammatical area of her brain. She worked on exercises putting together sentences with the words given, but wrote: We ate dinner around the campfire when a bear was coming toward us. I drew the little diagram I used to draw on the board when explaining the preterit/imperfect tenses to Spanish students, and asked: Do you mean that we were able to eat our entire dinner starting after we saw the bear ambling toward us and finishing before he reached us? She dissolved in peals of laughter at the absurdity of this, and wrote the sentence correctly, but then made the same mistake twice more on that page. She may have surmised that the simple past always goes second in the sentence, rather than after "when," whether that clause goes first or second (in the type of sentences we were working with). She can reason, but without the help of the universal grammatical categories that should have helped her when she was little, it's difficult and not automatic the way it was meant to be.

This is, of course, not the only problem keeping the autistic from independence, but it is a terrible hurdle to not be able to use English, and this angle of it has not been addressed by anyone. If the vaccine encephalitis lasts long enough, the language center of the brain is destroyed and cannot be rebuilt (as far as I know at this time), but for moderately-affected kids like my daughter, they can learn English but must be instructed in it from the ground up and given a lot of specific guided practice in each grammatical structure. They learn very little from total immersion. Our public schools at this time do not grasp this concept at all, and assume that autistic kids benefit from total mainstreaming, and will pick up English the way everyone else does. With NO understanding of the limitations placed by the brain damage, or the possibility of creating new neural circuits just as you do when learning any foreign language.

I think rather than trying to create menial employment opportunities, our first focus should be on English as a Second Language courses for the autistic. For some reason the public schools don't want to do anything at all for the autistic beyond assigning a para to them to do damage containment. The language therapy that my daughter has gotten at school for eight years has not improved her language at all, as it has not addressed the fundamental problem of severe damage done to the language category shelving system of her brain, damaged by encephalitis just the way strokes often damage the language center of the brain.

In Israel they have always had Ulpanim, Hebrew language courses for new immigrants to allow them to participate in Israeli society. We need something similar for the autistic, lots of structured practice in English, grammar, vocab, and cultural instruction all in one.

And, if group homes become the norm for the autistic, will they require all residents to get all the vaccines, including flu boosters every year? In that case, they'd have to forget the assisted living aspect and turn them into nursing homes.

Kim, on a related topic, JOBS, I received an email from a company that provides parking enforcement services to small towns & cities in the greater Toronto area. The company is interested in determining if this kind of work might be an opportunity for underemployed individuals in the autistic community.

"Any advice you might be inclined to offer would be appreciated," said company president Richard Chapman
(Ontario Parking Control Bureau Corp).

Readers, please advise.