What can you tell me about Autism?

One of the sad things is, when someone is what you could facetiously call "non-verbal", even the nicest, well-meaning people tend make lazy assumptions and tend to talk to them like they don't have their own complex internal world and lack the cognitive ability to receive, just because they have difficulties transmitting.

It isn't all doom and gloom, earlier today I signed a consent form for him to go on a group trip to Pizza Hut before the easter break as part of his curriculum. It isn't as frivolous as it sounds and there is an emphasis on teaching independence skills. But fuck it, it sure sounds like fun for a school day!

what can you all tell me about raising a child on the autism spectrum? my older son was diagnosed a month ago.

Do you live in the UK? If so you might want to make contact with the NAS or other organisation for advice and experience. I worked within adult services for an autism charity for a while. One thing for certain is that autism or autistic spectrum disorders as they were under the DSM4 can manifest quite differently in different people / children. One person or one family's experience will differ from another's. Services in different regions will vary also.

yea we are in the US, we've been getting early intervention services for speech and developmental delays already (he's 2.5 years old) and we are working with an agency right now to expand more services for ASD, services seem good right now but we are a little worried about what's available when he starts elementary school in a few years, the public school system in boston is gargantuan and a horrible maze and we haven't heard positive things from other parents of kids with ASD

what state do you live in?

MA

lemme talk to my gal and will come back if she has any recommendations. on thread or email is best for you?

thread is fine, thank you forks!

will do; can't promise I have too much to offer but (as i've discussed) my gf, who is originally from the boston area, works with autistic kids and it's a point of focus for her personal and professional life... so she may be able to say a thing or two to help.

gf recommends these folks as resources:
http://www.vsamass.org/
https://www.autismspeaks.org/

she has a few pals in MA who are special ed teachers and is reaching out to see if they have any guidance.

thanking you forks, yes autismspeaks is a treasure trove of good information and i wasn't previously aware of vsamass

Just FYI re: Autism Speaks, there are some concerns with the organization. Summary: https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/

Marcos, my kid Alex is a 13 yr old with a diagnosis of classic autism and various other things including epilepsy, onset Tourette's. Firstly I would say two and a half yrs sounds a bit early for a conclusive diagnosis, some kids are late with speech + language and display ASC type behaviour without being on the spectrum.

Because Alex was non-verbal and extremely non-compliant when we sent him to Reception (probably called Nursery School in the US) the fucking arseholes sent these Parenting Skills goons to our house, because obviously we were appalling abusive parents etc. The next step was they would only allow him to attend Reception for an hour and one of us had to be present, we were doing a job-share at the time so it was possible, but it was fucking contemptuous behaviour by them and they would get fucked for disablism these days.

Anyways after this I went F/T and we fucked off the school system for eight years and my partner home educated him and it worked out fine until after various failures (attempts to get him into a NAS private school, a free school disaster) one of our local state schools transformed from a general special school into a whole autism school where he has been for a year now. My partner is too ill to home educate so it has been a god send. Sorry if I am rambling and this is a bit too UK-centric but this my experience which is rather mired in the last decade, would like to think things have improved since then.

thanks xelab

yea it is quite early still

For anyone interested in what's going on in autism research: a researcher who has autism, M1chelle Daws0n, has a great Twitter feed (@autismcrisis). She uses it to dissect studies as they come out, giving shout-outs to carefully designed research and pointing out cases where research with autistic people doesn't meet the methodological standards of research on neurotypical people.

hey marcos, gf reached out to an old teacher friend in MA and here's her response... some of this may be super obvious but I'm passing along in toto

Early Intervention is based on geographic location. There is an office covering all of Massachusetts so its just a matter of finding which office serves their region. They can find that information here:
http://www.mass.gov/eohhs/gov/departments/dph/programs/family-health/early-intervention/family-info/about-ei.html
They should refer their son and schedule an appointment ( they have to get started sooner than later if he’s almost 3). The intake person will explain eligibility to them and also describe how services are delivered. When the child already has a diagnosis of autism it is easier to get started with the support services specifically related to the diagnosis (ABA etc).

Marcos, I have a son with pretty serious developmental delays - it's a mélange of things but the short version is that he's 4 and does not talk.

Speech/language delay may or may not be autism. Apraxia of speech is, for convenience, sometimes placed on the autism spectrum but it's not always appropriate.

Early intervention for us was a godsend. We're in Virginia; I don't know how different it is elsewhere, but we've been completely blown away by how many resources there are out there, if you just know who to ask and how to ask. E.g., there was a specific person whose JOB was to make sure we got the therapists we needed, that the therapists shared notes and worked together, and that their appointments were convenient for us.

When my son aged out of the early intervention program, they transitioned him smoothly to the county school system, where again, the support is lavish. Free all-day special ed preschool? Door-to-door bus? In-house speech, physical, and occupational therapists each seeing him twice each? All for free. (Or, at least, all included in what we get for our taxes.)

Best of luck to you and to your small person.

Also, what xelab said. Sure, 2.5 is young for diagnosis, but overall I think it's a GOOD thing that your health care providers are on the lookout for autism - because catching stuff early can make a huge difference. If it turns out that it's a premature diagnosis, nothing you're doing for him now will be harmful - it's all good. Some boys do just show up late to the developmental party, and are fine once they get going - but better to be on the safe side.

You may wish to consider http://www.apraxia-kids.org/stay-connected/apraxia-kids-email-listserv/ in case what you're dealing with is apraxia that is not specifically autism.

In our specific case, about the only things we know for sure is that our son is not autistic and not deaf. We have near-daily heartaches over what he's not doing, and it's a big psychic blow to realize your kid is not on the same trajectory as kids generally are. Other four-year-olds are deciding what kind of dinosaur they want to be when they grow up, and yeah. We're missing out on some of that. But he's so sweet and so cheerful; the best thing we can do is focus on where he is now and who he is now.

thanks YMP! and thanks forks too for your gf's input.

nice to get that confirmation about early intervention. J's been in it since last july, it's been amazing and we've been consistently astonished that we are getting these incredible services for free. we've been so impressed by every person we've met. we have a general developmental clinician 1x a week, speech therapist 1x a week, OT 2x a month, playgroup 2x a week, it is awesome. right now we are working with an agency to get the additional autism-focused services (early start denver model).

i also found out that my health insurance covers ABA from ages 3-6, so that is such a relief.

very interesting YMP about apraxia. we know a few kids from J's early intervention playgroup who present with that. J is actually SUPER chatty, mostly the diagnosis has centered around limited skills in social communication and interaction and he presents with extremely restricted interests that get very obsessive and intense - trucks, cars, garbage bins - lining up toys, getting very anxious and upset with things are moved around in ways he doesn't want, some echolalia and repetitive use of languages and certain phrases, some very strict adherence to certain repetitive routines and behaviors. he is such a cheerful and motivated and intelligent kid though and my wife and i, despite worrying about the diagnosis and how it will play out over the years, have a pretty wonderful relationship with him.

i TOTALLY get this:

We have near-daily heartaches over what he's not doing, and it's a big psychic blow to realize your kid is not on the same trajectory as kids generally are. Other four-year-olds are deciding what kind of dinosaur they want to be when they grow up, and yeah. We're missing out on some of that. But he's so sweet and so cheerful; the best thing we can do is focus on where he is now and who he is now.

the timing has been crazy, too, we just had our second baby a week after getting the diagnosis and it's just been really overwhelming and intense when he have this other new baby to care for and also research and learn about autism and plan out all these services.

and i am feeling really overwhelmed with how politicized debates about autism are, too, so much misinformation and quackery out there from so many people and yet even the mainstream organizations, research, and therapies get called out and criticized all the time too

"extremely restricted interests that get very obsessive and intense"

In other words, a wee future ILXor?

haha

hey just want to say i appreciate y'all on this thread & reading this conversation
i am not a parent or an expert in any way but i do coteach special ed inclusion classes & i really love my stunts w/autism, and the parapros who work in class w/them
i can't imagine how draining all the politics are but the one thing i think is interesting is they have had some laudable, noteworthy effects. this from andrew solomon's _far from the tree_ chapter on autism: "Not since the height of the AIDS crisis has there been such an aggressive campaign for funding and research, with scores of organizations (many of them with snappy acronymic titles such as SafeMinds) pursuing theories of causality, the development of behavioral treatments, appropriate schooling, disability benefits, support services, and supervised housing. Cure Autism Now, a parent group, pushed Congress to pass the 2006 Combating Autism Act, which mandated a billion dollars of spending in five years, for research on autism and related disorders."

"i am not a parent or an expert in any way but i do coteach special ed inclusion classes"

In my experience people like you have been the only other people who have made any positive impact on Alex's life, whoever the experts are they have done fuck all. Whereas he has developed very close and important relationships with his teachers and classroom assistants.

These people that talk about "cure" need to be shut down.

yeah I know I am parroting Temple Grandin here but I really do love & appreciate the different type of thinking they bring to class & class discussions

and their parents, too, damn! parenting is a 24/7 job but these folks on the real...anyone who can get their kid to do homework after school is a god in my mind, let along homework, and ot, and hippotherapy, and tutoring, and art therapy, and speech therapy...

also sorry for the v undortunate typo upthread, i obv meant 'students' not 'stunts' :/

complicated story but most important note imo is

"What scared us in the Bay Area is that there are thousands of kids just like this one," said Jill Escher, president of the board of the Autism Society of the San Francisco Bay Area. "Imagine if lawsuits like this were allowed to proliferate on such allegations. This could happen to all autism families at the drop of a hat. They would not know where to go."

i wdn't worry, no civilized legal system would allow a malicious case like this to oh wait Superior Court judge you say??

Sometimes you see signs that we are living in more enlightened times regarding attitudes and legislation towards people with ASC's, and then you read shit like this :(

A bunch of privileged, self-important people who think they should be able to live without the slightest discomfort or inconvenience.

ugh what fucking assholes, i feel awful for that family

A bunch of privileged, self-important people who think they should be able to live without the slightest discomfort or inconvenience.

― Aimless, Sunday, September 20, 2015 12:53 PM (Yesterday) Bookmark Flag Post Permalink

http://www.mercurynews.com/health/ci_28839003/sunnyvale-neighbors-say-autistic-boys-parents-ignored-their

By August 2013, when the Flowers moved to a rental house on the court with their two young children, they told their children that the boy was "special, and we need to understand him," even after the boy slapped their young daughter.

But in October, when he said the boy attacked their young son on his fourth birthday -- pulling his hair, shaking his head back and forth, kicking him on his back repeatedly -- Robert Flowers reluctantly called the police, because he said he wanted a paper trail to be established in case the attacks continued.

"I didn't want to do it, because I knew I would look like the bad guy," said Flowers, who moved out of the rental house with his family last month.

"We're not upset about him being autistic," he clarified. "We are concerned and upset about his violence (toward) our children."

After yet one more attack in early 2014, Santhanam said, he and his wife asked Gopal and Agrawal to meet with them to talk about the problems and create a plan that would keep the children on the block safe. He said at one point, Gopal and Agrawal suggested their son could play outside on either the odd or even days of the week, and the other children could play on the opposite days.

But the boy's parents, Santhanam said, ultimately didn't commit to anything.

The two couples filed their lawsuit in June 2014, asking the court for a preliminary injunction against the family to ensure their son does not strike, assault or batter anyone in the neighborhood or their personal property. One month later, the judge agreed.

I feel awful for the family too, and I think a nuisance lawsuit is probably a terrible way to handle this, and would set a terrible precedent. But if it were my kids getting violently attacked I'd be pretty upset.

i think these people are extraordinarily shitty for pursuing a lawsuit against this family. flowers said "this is not about autism, this is about public safety." sorry asshole, this is definitely about autism. you cannot detach that detail from this case.

also i am curious about the circumstances under which the boy with autism was "attacking" other children -- were they giving him enough space? how were they playing together? did he just walk into their yard and attack them? i doubt the latter tbh though obviously i don't know. my son is not aggressive in the slightest but when he feels threatened or has his personal space invaded he gets pretty intense.

Are other people responsible for knowing in advance what might threaten your son, particularly people you don't know? This is a super unpleasant situation for everyone involved, and there seems to be a little bit of a taboo around the connection between autism and violence. It's hard to talk about the connection without appearing to demonize autistic people, but self- and other-harming behaviors are real and can cause problems in many autistic children and adults.

xp idk man, but the kid attacked was four, so how do you teach a four year old to give another child enough space?

Is your son autistic Marcos? Feel free to just not respond if you don't want to get into it. My wife has had a lot of autistic students, and obviously there are a huge spectrum of different behaviors, but some of them just need one-on-one paras to be with them at all times in order to prevent that kind of thing from happening, and it is a safety issue for other kids in the class.

Fourth birthday = implies they were together at the bday party

Xp

xp ya my 3 year old has autism. he is pretty high-functioning and we are supervising him 100% of the time basically but tbh more his own safety/well-being, like i said he is not aggressive at all, we are more worried about other kids getting up his space and overwhelming him and causing a tantrum/outburst/sensory overload thing.

not saying the parents aren't at fault, idk the situation, but calling the cops and suing them is complete bullshit imo, and the attempt to avoid the complexity of suing a family with an autistic child by saying this is not about autism makes me think they are pretty shitty people. it is about public safety, your child's well-being, sure, but it IS also about autism.

we don't know all the circumstances and i don't live in the US but i can't imagine any course of events that leads to this kind of legal action that doesn't involve the plaintiff being a wanker

What about about the neurotypical kids that are violent? Where I live they outnumber the kids with autism who are violent by about 999/2 and cause all the problems, in fact there are two ASC kids on my estate and they pretty much never go anywhere unaccompanied for their own safety. Some of the same ignorant fear-mongering coming from the precious entitled suburban fucks itt that was highlighted in the original link.

yea i am definitely more worried about kids fucking w/ my son then vice-versa, he is especially vulnerable

this case only furthers the notion that people w/ autism are the problem rather than how others treat people w/ autism

I hope no one on this thread ever has to know about this, but in the US, a civil suit against the parents is vastly more humane than getting getting the criminal justice system or protective services involved.

but is there no intermediary third-party mediation option? it seems like a helluva way to escalate

one of the articles says that third-party mediation didn't work.

and that the parents who are being sued were not watching their child while he was out playing, at some of the times of the alleged attacks; neither was the child's sitter.

It's always dangerous to wade into these things on the internet because it's a little like that Maine diner toddler story that was going around -- a lot of one person's word against another, facts always incomplete, people interpreting things how they want etc. But I'm not ready to join the chorus against the parents filing the suit after reading that their small kids were physically attacked multiple times, which has nothing to do with whether it's the autistic boy's "fault" or not.

Well you could always start some pressure group for disability free neighbourhoods, one in which your precious fucking children can grow up in an environment that is entirely free of child on child violence.