What can you tell me about Autism?

haha

crooked timber posting some good stuff about autism this week

Today my son was punching me, scratching my face, trying to gouge my eyes out, he ripped my shirt and he grabbed my glasses and snapped them. This violent anger is a newish thing to him, it was a rough day. People with ASC can be the worst and best people in the world within the same hour sometimes.

love to u both, xelab

Thanks for your sentiment NV. Was talking to a teacher today about the best way to restrain violent kids, because on friday I was worried about getting arrested. She said she wasn't allowed to tell me the best way because if we get injured following her advice it becomes a litigation issue. I hold his arms and push him towards the ground. His mother can't do that because she is very ill and frail right now. It is a bit of mess right now but we will get through it.

tight hugging is a good way of trying to restrict arm movement i think, has the benefit that some children with autism spectrum conditions find that kind of overall pressure soothing. using your body to deflect them and keep them in a small controlled space feels relatively safe but obv you're vulnerable to kicks/punches at that distance. in general blocking and hugging feel the least dangerous to me but obviously you can judge for yourself.

if you can find/create a safe space that you can withdraw from but contain them until they've calmed down that's best i think. obviously that isn't always an option. most professionals can't express an opinion about restraint and i've got to admit i'm wary of those who are too gung-ho about it.

you will get thru it together, you'll get better and better at spotting potential causes of frustration/outbursts, and your boy will learn ways to deal with that frustration that don't involve violence. i can't imagine how tough it must be at the moment. hope i'm not being presumptuous in talking about this.

It probably sounds a bit savage, but I was restraining him by his arms because his attack occurred next to a busy road and at this flashpoint it seemed the only way. The truth is I was caught cold and even after almost a decade of experience of ASC behaviour I am still not an expert. He has been so chill for the last couple of years and the meltdowns became more infrequent and shorter and easier to bring him out of at times I almost forget about autism.

He had a lot of triggers on that particular day like a long train journey to his fave leisure pool only to find out the timetable has been reduced to weekends only, so then we had a disappointing return journey on a shitty virgin train with no seats, rammed carriage and no air conditioning, full of irritable, sweaty, stressed people. Strangely he coped with all this very well. The attack came after his downgraded swimming session at the local, very basic swimming pool.

Now that I am mentally prepared for any future incidents it will be a lot easier to deal with. My key failure on friday was losing my calm and letting the gawpers distract me, when you worry about gawpers you become self-conscious and less effective at dealing with the situation. Going to start carrying my Autism Alert cards again, anyone got anything to say? Here have a card. That saves a lot of energy and arguing.

just been playing chase with a student round work. gawpers are my weak point too.

Autism risk genes also linked to higher intelligence

Researchers at the Universities of Edinburgh and Queensland analysed almost 10,000 people recruited from the general population of Scotland. Individuals were tested for general cognitive ability and had their DNA analysed.
The team found that even among people who never develop autism, carrying genetic traits associated with the disorder is, on average, linked to scoring slightly better on cognitive tests.

I guess that if you are going to carry out a study, you're also going to release the results and summarize them in a way that highlights whatever information you were able to glean, if any. But it seems to me that discovering a slight increase of cognitive ability among those who carry genetic traits associated with autism is such a qualified and watered down finding that I doubt it sheds any meaningful light on autism at all.

Its akin to the results that find genes predisposing to sickle cell anemia protective against malaria, genes predisposing to schizophrenia are associated with creativity, or genes for lowered skin melanin and higher skin cancer protective against rickets and multiple sclerosis at high latitudes. Its offers an evolutionary rationale for why genetic traits with some very bad potential outcomes have persisted.

There's such a broad spectrum diagnosis of ASDs with the DSM it renders correlations like this meaningless.

I personally believe that throughout human history it is people who would be considered to be on the autism spectrum who have consistently been the inventive outsiders who have been the driving force in engineering, technology etc - all the stuff that has sent apes to the top of the food chain. I can't really back this up with a coherent argument and am slightly biased as someone with an ASD son and a spergerish bro who is a top programmer. But this is just my strongly held unresearched opinion!

Its offers an evolutionary rationale for why genetic traits with some very bad potential outcomes have persisted.

It is clear that the researchers hoped to establish a link of that sort, but it is not clear that the results they obtained are strong enough to prove that link. If this study were to be repeated on further groups of a similar size, with similar results for each study, all it would do is firmly establish that any linkage is too weak to be decisive. Cognitive ability is not very analogous to resistance to malaria.

Just saw the film x+y and I am fucking incandescent with rage

(i'm slightly autistic btw)

Absolutely the biggest pile of reductive, sentimental, poorly-characterised, sloppy, soppy, useless horseshit I can imagine. This Richard Curtisification of mainstream 'British' cinema needs to fucking die. A film about autism by and for non-autists. The irony is inherent. NONE OF THESE CHARACTERS ARE REAL

if any of you liked it I hate you forever

Oh and the soundtrack! Keaton Henson, whoever you are, Google yourself and feel this, my hatred

what do you mean by 'slightly autistic'

And throw in a crude, faux MS sufferer to distract people from from the fucking sub CBBC level of autism knowledge inherent in the script. I only saw the trailer and I wanted Rafe Spall to fucking die!

nakho if you had seen me between the ages of 4 and 20 you would not have asked that question

have been diagnosed at 18 by a psychologist as aspergic, now I know you dispute that is a thing and I am not convinced myself, but I have a large number of tics, some based around the idea of my left side and others based around my hair touching the back of my neck, that act as residual physical manifestations of whatever weirdness - let's call it mild autism - that a slow, slow process of exposure to social grace & developing of empathy have whittled down. also I'm a maths pedant, also I would burst into uncontrollable anger all the fucking time over the most minor things, I could go on

xelab otm obv

I was diagnosed with aspergers quite young (maybe 8-10?), I disregarded it for a long time because I didn't see much similarity between myself and other aspergers youths, but recently I started thinking there might be something to it, so I got reassessed. They couldn't really tell me anything other than I might have a form of it that manifests in very subtle ways, so it was best to keep note of "mild aspergers" at the job centre.
One woman told me that she thought the word "aspergers" would not be used by professionals in 10-15 years; she also said tv/movie depictions of autism drove her nuts, even documentaries because they tend to focus on extreme types of autism, that doesn't indicate the immense variety of autistic types.

I really don't know what to think, sometimes I feel totally normal with more or less normal difficulties, but sometimes I feel like I have hardwired limitations. My math skills are horrendous and I just never seemed to get beyond primary school basics with it.

Like all the stuff asperger kids are supposed to be good at is the stuff I'm worst at.

The movie version of the autism spectrum really sucks a lot of shit, if you are not male, cute and gauche and brilliant then are you are part of the invisible morass of the unwanted disabled in their world. Clair Danes did a fine job of depicting someone with classic autism but the fact remains if she was plain looking it would never have been made and she was depicting someone on the remarkable genius end of the ASC spectrum. Ordinary existence for people on the ASC spectrum is not very hollywood, it involves a lot of discrimination, alienation & depression and more often than not bad endings that wouldn't befit some prettyboy-prick driven movie project.

i spent some time with a childhood friend of my gf at a bar a night or two back and she clued me in prior that he was on the extreme end of the spectrum. i met him in front of the bar and he before going in he delivered an agitated two minute monologue to no one in particular about the faulty ergonomics of the entryway, then spent most of the time at the crowded bar wincing painfully whenever there was noise nearby and reacting with OTT exasperation when he couldn't find a place to comfortably stand.
we had an hour long conversation that was almost painfully intense (the crux was that his sister was shot and killed by the cops a year and a half earlier) and exhausting both in what he required from me as a conversational partner and how very much I empathized personally with those needs. basically everything that was bothering him was bothering me, only i've established tactics to cope more internally. it was a real reminder how close i run alongside these issues and how vulnerable being around people who are just a bit (or a lot) more damaged than i am makes me feel. we had several moments of genuine connection and I'm happy we made that happen but i walked away very anxious and claustrophobic.
gf spends at least a few days a week working in classrooms with autistic students and some of the horror stories she relates are very depressing, less in terms of behavior and more about the long term prospects for a lot of the kids. as a social issue, it's gonna hit a new level of critical density in the next few decades and i don't think there's any real system in place or being put in place. one love to everyone on board who has to deal with this either personally or with a loved one, it's a helluva fight.

Why do you think it's going to "hit a new level of critical density"?

loads and loads of diagnosed kids aging out of the system with no social safety net in place whatsoever

highly recommended documentary about autism in the Hoboken NJ school system
http://www.netflix.com/Movie/70287268
http://www.metacritic.com/movie/best-kept-secret

I don't see how it's different than loads and loads of undiagnosed kids aging out of a system, or there being no system at all. I agree that autistics and their families should have services available and that we should determine what services are most effective, but that doesn't mean that the population is changing in a catastrophic way.

i'm aligning myself less with alarmists suggesting GMOs or vaccines are causing autism and more with those allowing for a broader definition, especially when it benefits an undersupported group of parents and sufferers. Awareness is rising, the diagnostic tools are being applied much more rigorously, the symptoms considered as qualifiers are more widely defined. it's not gonna be politically expedient much longer (i hope) for administrations to ignore a growing constituency. so i'll walk that back to a "new level of critical density within the culture" but i would hope, given the context of that post, you can understand where a more emotional phrasing comes from.

Autistic UK believes in the central principle of the Madrid Declaration; “nothing about disabled people without disabled people” and seeks to ensure that autistic voices are heard.

It seeks to include as broad a range of autistic people as possible.

It seeks to challenge the consensus view of the meaning of the word “autism”.

It seeks to encourage the emergence of a consensus view on the nature of the autistic experience within the autistic population of the UK.

Autistic UK believes autism is not something a person “has” any more than a person “has Englishness” or “has heterosexuality”.

It does not seek to answer the question, “What is autism?”; it seeks to ask the question, “What does it mean to be autistic?”

It applies the social model of disability to autism arguing that autistic people are disadvantaged because society disadvantages them, not because they “are autistic”.

It challenges the various myths and falsehoods regularly propogated concerning autism.

It insists that autistic people must be invited into the discourse regarding the nature of autism and what it means to be autistic.

It challenges

the Triad of Impairments as a meaningful summary of autistic characteristics
the terms “high-functioning autism” and “low-functioning autism”
the concept of the “autistic spectrum”
the claims that autistic people “lack empathy”, are “emotionally illiterate”, are socially illiterate, lack a sense of humour, lack imagination, lack creativity
the claim the autism is “predominantly a male condition”

Autistic UK promotes the concept that being autistic involves difference rather than deficit.

Autistic UK operates on the principle of inclusivity.

The autistic population is an extremely heterogeneous group.

It is probable that the only feature common to those people diagnosed autistic is the fact that they are all diagnosed autistic.
It argues that all those interested in addressing the various questions surrounding the experience of being autistic ought to be involved in that conversation (including those whose views are sharply divergent with those of Autistic UK)

Autistic UK recognises that many autistic people are struggle to represent themselves and some are incapable of representing themselves

Some can represent themselves without support
Some would benefit from support
Some need support
Some need a high level of highly skilled support
Some, even with support, will be unable to represent themselves

This last group, although they might be able to express preference and even participate in, for example, designing their own “care package”, nonetheless will struggle to engage with a “political” or “strategic” agenda (such as designing local services).

We are aware that in some situations the most appropriate people to speak on behalf of these people are their parents or other family members.

In other situations it might be more appropriate for these people to be “represented” through the involvement of more able autistic people.

We encourage family carers to represent themselves as carers.

Some autistic people are family carers of autistic people too.

Non-verbal or uncommunicative autistic people should always be given “the benefit of the doubt” in terms of IQ.

The definition of a “person with a learning disability” in British legislation follows that of the World Health Organisation; a person with an IQ of 70 or below.

Autistic UK challenges the assumption that non-verbal or otherwise seemingly “low-functioning” autistic people must be learning disabled.

If a person has little or no verbal communication then administering an IQ test is problematical and determining the IQ of such people is not a straightforward matter.

Often no attempt is made to determine the IQ of such people.

Without formal IQ testing the term “learning disabled” ought not to be applied to anyone.

Tools with an inbuilt language bias such as the Wechsler Scales (Wechsler Intelligence Scale for Children or WISC and the Wechsler Adult Intelligence Scale or WAIS) should not be relied upon with autistic people non-verbal or otherwise and whatever their apparent IQ.

Tools such as the Raven Matrices should also be used in order to obtain an accurate IQ score and to gain a better understanding of how difficulties with language might be affecting the individual.

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.

I am aware Puffin, as I am with Calzino, that's why I'm cautious about sharing stuff and sounding insensitive. I can only offer compassion for what you both carry with this.

Fwiw, my son is coming up 18. 'Neurodiversity' doesn't do justice in naming his struggles, even if that's how he's labelled. At present, he's being treated for severe OCD and has been out of education since he was 15. There have been periods in the last four years where he hasn't been able to leave his room (these periods have been up to a month at a time; people take 'can't leave his room' to be a metaphor. It isn't.) He has various ASD traits but has never been formally tested.

(It goes without saying but: he is fucking awesome.)

Best to you Chinaski