In Lawrence, MA, there is a sad murder trial finishing up. A woman is being charged with the murder (via neglect) of her 9 year old autistic son. The boy died from cancer (leukemia), while his mother failed to give him anticancer drugs that were prescribed for an earlier cancer.
The descriptions of the boy’s behavior are shocking-the child could not talk, was not toilet trained, and behaved like a wild animal.In addition to the autism, the boy had food allergies, and would only eat a few items of snack foods.
From what I read, the poor woman was essentially a slave-she had to quit her job to provide 24 hour care for her son. The two were living in anattic apartment, and had no assistance from the boy’s father.
My question is: to autistic people like this boy ever improve as adults? Would this boy ever be able to live alone as an adult?
There is a huge spectrum of autism and this story seems to be at the extreme end. In addition to that there are treatment options which it sounds like this woman didn’t have access to which would have improved the boy’s ability to function.
My cousin lives in a group home. Her bills are paid through SSDI and Medicaid. She is capable of holding down a “wipe up tables at McDonald’s” job which the home drives her to - that gives her a small income for personal things. Her parents, sisters or someone from the home will take her shopping.
She’s pretty severely autistic. She is intellectually about eight or ten. She would have been born around 1973 I think (she’s about the same age as my youngest sister), so some of the advances in treatment of autism were not there for her and she may have done better with early intervention, but I don’t think “better” would be “able to live independently.”
Sorry if this is a hijack, but what do you do if you find yourself in such a situation? Are there social services that cover this extreem a situation? If can’t work becuase a dependednt requires rond the clock supervision and you have no other support what do you do?
Basically, the caretaker is screwed unless other family members or a charity can help out.
Much depends on where you live of course. I have a friend with a young autistic son here in the North of England. He is far better functioning than the kid in the OP but nonetheless caring for him is exhausting and demanding. However, at the moment, my friend is able to claim disability living allowance to help pay for the expenses of his care and she is entitled to subsidized travel. He goes to a specialist school. Indeed, in theory, every child in Britain is entitled to an education and no parent should be left with the child 24/7. In practice there can be difficulty finding the right place for the child and my friend’s child was out of school for a year after his mainstream placement broke down.
The right to education for kids with learning difficulties (preferred phrase over here) lasts until the age of twenty five. Thereafter, if the kid is still living with parents the options include day centres.
I feel cautiously optimistic about the prognosis for my friend’s son. He is highly intelligent and I hope he will develop coping strategies for his social difficulties. Eventually I’m sure he will be living independently although he may well always need help.
Unlikely, given how low-functioning he was. What a tragic situation all around. Parents of kids with such extreme issues need a LOT of support - which it sounds like she was not getting. The father being uninvolved is far too common - a lot of marriages break up when a disabled child is added to the mix.
And, yanno, if I had a child that was that profoundly disabled… I might consider refusing life-extending medical treatment. I suspect the authorities would try to get involved and force the issue… but then maybe moving the child to a foster care situation at least part time would be the best thing in the world.
More generally, “what becomes of autistic adults” is a pretty broad question, because autism is a very broad range of disabilities. There’s a Nobel Laureate with Asperger’s Syndrome (a form of high-functioning autism). At the other end, you have the boy in the article. Let’s call it a range of 1 to 10, where this boy was a 1 or 2, and the Laureate was a 10.
My 20 year old nephew is currently living with his parents (who, by the way, are divorced… though signs of strain were there even before he was born). He will, hopefully, ultimately live in a group home run by a charitable organization. He can be left home alone for a few hours at a time, and is toilet trained and verbal (if obviously impaired). He can microwave snacks but has made mistakes with it. He won’t eat anything like a healthy diet. He’s obese. He barely reads. To the best of my knowledge, he has never been violent.
He still attends “high school”… which is a special ed program located at the high school, and he is learning some things but nothing all that academic, obviously. Mostly life skills. His IQ, as best as they can test it, is 80ish.
He will never hold down anything more than a sheltered-workshop type of job and he will CERTAINLY never live alone. He has a seizure disorder (fairly common especially in lower-functioning autistics).
Let’s call him a level 5.
Then there’s Dweezil, my 16 year old. His intelligence is normal, as far as we can see; he learns material, but his grades don’t demonstrate that because once he’s home for the day, “school doesn’t exist” so he misses turning in a lot of his assignments. He receives special ed help in pretty much every class but is largely mainstreamed.
He’s planning on going to college, though I think the first 2 years will be at the local (very good) community college. He has his own bank accounts which we check periodically; we pay his allowance + school lunches in there every month and he handles all his petty cash.
He goes out on his own (we got him a cell phone so we feel he’s got a safety net) - LOVES to ride the Metro downtown and go to the zoo or the Smithsonian. Even handled an encounter with a police officer at the zoo one time - our schools had a teacher workday, but the policeman was concerned to see a teenager at the zoo during what he thought was school hours. Had Dweezil panicked at being questioned, that might not have ended well.
He’s pretty impaired socially. No real friends except another boy from his special ed program, and of course neither boy thinks to contact the other to arrange outings.
He has goals but doesn’t put the thought into intermediate steps to make those goals achievable (e.g. college, a business he’d like to start up). So he needs quite a lot of support with things like that.
On the other hand, he keeps up with his day-to-day chores pretty well (e.g. he’ll start his own laundry, he’ll do the dishes without prompting when it’s his turn, he can cook from any reasonable recipe).
So let’s call him a 7.5.
8 years ago, we made the choice to move to a larger house so we’d have room for him to live with us as an adult… but he might not need to.
My step-father’s grandson is probably a step or so below Dweezil. He’s just recently graduated from a special-ed school. In many things he’s above average - he’s interested in maps, and transportation, and can navigate public transportation well, but will probably never be able to count change. He loves horses and works at a stable and dreams of training hunter-jumpers, but will never be able to do that - he won’t be able to navigate the complex world of horse business. He understands that he does better when he takes his meds, and is responsible enough to do it. He may go to a group home environment, but I don’t think he’ll ever be able to live on his own.
StG
There may be county / state-run services that provide assistance. You have the child declared disabled for Social Security purposes (not difficult in such a situation) and there’s some money from that; friends of ours (let’s call their child a 3-4 functioning-wise; she’s largely nonverbal and will escape at any opportunity) have some caregivers provided through Social Security, I believe. I think - but could be wrong - that the care is in addition to the disability stipend.
In this case, the parents are both well-educated and in tune with digging out resources. The mother in the original story, clearly, was not.
There are residential school placements available for some kids; another family we know has their daughter living in such a situation (in another state), basically until she turns 22. Not sure what they’ll do at that point. It can be very difficult to make a case for the school district to fund such a placement (and it is, indeed paid for by the school as far as I understand it).
In the U.S. most low-functioning children and adults end up in group homes. I know it’s painful to separate children from their families, but really, almost no families are equipped to provide the kind of 24/7 care an individual with few skills requires. Depending on the home, it may be funded by the state or by charity, and it may or may not require surrendering guardianship of the child. Adults are frequently paid for by SSDI.
My partner spent many years working as an aide in these homes, and they do their best to provide physical care, training in life skills, appropriate social and intellectual interaction, and health care for the many complications common to cognitive disorders (obesity being nearly universal). How well they did, of course, varied considerably.
Which can be applied to just about anything, if you think about it. Few developmental disorders or anything involving the brain have clear-cut prognoses. I’ve read stories about high-functioning autistic youngsters deteriorating through adolescence due to hormonal changes, and never quite rebounding back. I’ve also read stories about profoundly autistic kids who eventually learn to communicate (usually through computer technology) and learn how to handle their world enough so that they can live somewhat less dependently.
The obesity thing is true, but I just want to put it out there that it’s usually due to medication prescribed to control behaviors, not the actual disorders themselves. Risperdal, a drug prescribed for just about every mental disorder nowadays it seems (but autism and schizophrenia being the most common ones) can cause people to balloon up due to increased appetite. And this happens especially in kids, who are not conscientious enough to link eating a whole lot with “wow, my jeans are getting tight!” There are also meds that alter metabolism. It’s unfortunate that people on the autism or schiz spectrum have to deal with these realities in addition to their symptoms. (Also, if you’re living in an institutionalized setting, chances are you’re eating starchy foods and not provided with opportunities to exercise. So those things also play a part.)
All children with autism attend school (assuming they are of at least preschool age), so no parent should have to provide 24/7 care. Additionally, some children qualify for respite care, but I believe it’s not usually very many hours per month.
If the boy was nonverbal at age nine, it’s unlikely he would ever improve enough to live independently, although I have heard of children who learned to talk after being nonverbal up to the age of nine. Unfortunately most people with autism (excluding Asperger’s here) have some degree of mental retardation and cannot live fully independent lives.
I help care for a 22 year old with severe autism. She is non-verbal and cannot be left alone at all. She knows a little sign language and she and I get along well, but it can still be fairly trying. She is intelligent enought to be sneaky. 
The first time I stayed with her by myself, she put me to the test. She flooded the kitchen with the sprayer, set a dish towel on fire at the gas stove and begged for food all day. I told her dad we had fire, flood and famine. All we needed to top off the day was a plague of locusts. He said, “Don’t say that too loud, she’ll bring 'em.” 
Her mother left a year and a half ago, so dad, brother, aunt and I were on a schedule until last week. I usually only had her one day a week and filled in for eveyone else when asked.
Last week, her brother (28) just decided not to show up nor answer his phone for two days, so I got a frantic call at 7am asking if I could cover for him. I am now going to care for her 3 days a week.
As mentioned above, she takes Respiradol, which causes food cravings. She was 330 lbs when I started working with her, but is now down to 275 due to alot of effort on the part of her caregivers.
Her dad has a locked pantry (fridge is also in there). Locks on every door in the house where anything paper or liquid is stored (she tears up paper and pours out liquids). The whole house is built with an eye toward her care.
She will go through anything left out looking for food and/or paper to tear.
She got into her aunt’s car a few weeks ago and into her purse and tore up $127 worth of bills. :eek:
Washington state pays him around $10 per hour for 240 hours per month of care provided by him or outside caregivers. He ends up paying for alot of extra hours out of pocket. In this state there is alot of support for home care as opposed to institutional care, but the state budget crisis is impacting that quite alot.
Adult, intelligent humans already have trouble with this* - add in starchy diets (like you mentioned), cognitive impairment, poor life planning skills, and trouble with impulse control, and it’s no surprise that obesity is common even without the compounding factors of medication. It’s a real shame, because I think that it further stigmatizes the adult impaired.
*Like me, for instance.
I had an autistic student in my math class. He earned an A, but was entirely frustrating since he didn’t take direction (but he did learn). He could talk but not in anything like a normal way. It was extremely loud and in disconnected words. Several years later I ran into his mother (she had observed my at the supermarket during the day several times and couldn’t decide if I was a professor or a bum–sometimes it is hard to tell the difference). Discovering that I was McGill professor she mentioned that her son had been a student there and told me his name. Normally I would have forgotten it but this one I recognized instantly. Anyway, she told me that had gotten a job as a computer programmer and added that that is what saved him and she could not imagine what he could have done in an earlier era.
Father of 9 year old with moderate autism and wife and I own 2 day programs from developmentally disabled adults, including adults with autism.
Our son goes to a special education (geared towards autistic students) classroom at a public elementary school where he is usually near the bottom of the class in academics. Of the 7 boys in that class, only 1 boy is overweight, yet all of them are pretty active. We have tried risperdal, but it really didn’t do anything except create extreme anxiety in our child which in turn, made him even more active (pounding floors, walls, furniture, etc.), including increased echolalia. He actually lost weight when we used a 30 day supply. I guess if risperdal works, you will eventually gain the weight while other symptoms of the disorder are more controlled, but if it doesn’t work, you will remain underweight (if someone kept taking it although that would not make sense) or you would discontinue use. Our kid seems to be atypical when it comes to medication and their interactions with him, so our psychiatrist has to think a little outside of the box.
Instead, we opted for a combination of intuniv and lexapro along with theanine and other supplements. This has helped his anxiety tremendously without the harmful effects of risperdal. His appetite is normal although he still has an affinity for certain foods, both good (broccoli, bananas, peanut butter, chicken, apples, gluten-free bread) and bad (bacon, snacks, sweets, regular bread with gluten, etc.). He is still pretty active, so his weight is still in check (70lbs.). Gluten is an issue, because it increases his activity and usually it is not in a positive manner. He is usually displaying this activity for the next 12-36 hours. Casein is not an issue.
Looking back at the OP, I can see how losing just one support could have devastating results for the remaining caregivers, because the care for someone who is autistic is very draining, especially for a single parent who has little to no support. With budgetary cuts for social services, that also puts the single parent even further in jeopardy of losing the ability to care for someone with autism or any other disability. I bet the parent had very little or no sleep because the child is not regulated enough to have a decent sleep pattern either which further exasperates the situation. It could of been the difference between giving the child his other medication or wishing for a small slice of peace for herself under extreme duress. Not a great situation to be in.
To add to the OP’s question: “to autistic people like this boy ever improve as adults? Would this boy ever be able to live alone as an adult?”
Yes and no. Some kids do improve and actually contribute to society…those are the ones who are not in our day programs though. I have those who remain the same or deteriorate further into the spectrum. A lot of factors determine the outcome and to different degrees since each case is so unique…there really is no silver bullet to make someone less autistic or prevent them from being more autistic. You do what you can. For our kid, we’ve done about half of these therapies, and there are others there that I wouldn’t touch with a ten foot pole. If you got the resources, you try whatever you can, see if it has some success and discard if it’s not working for him/her. But whatever you do, don’t do nothing.
Hell YES!
The “all kids with disabilties need to live at home” idealism is just…almost as bad as the “every special needs kid needs to attend mainstream school” inclusion crap idealism.
I think this is a BIG factor in what happened in this case. The mom had very little support in raising a kid with severe issues (both autism AND cancer) and just lost it. It is hard enough to raise a kid with severe issues with a partner, not to mention in times where there are severe budget cuts etc… I know the sister of this mom IRL. She was claiming her sister was innocent and that the media was distorting things, although I don’t really know the details.
Whenever I watch something on the news, for example the little girl who stopped aging at 3, the parents always say that they’re happy with the way everything turned out and they wouldn’t change anything at all.
I always wonder if they’re telling the truth. If they’re genuinely happy with how she turned out, or are they just either lying to the camera or to themselves.