First off – what is acceptance?
I’ve heard tell that in terms of autism, acceptance equals resignation. But this defeatist attitude came from someone who was a self-confessed anti-vaccinationista. The truth is that acceptance is hard work. It entails a massive learning curve. It requires a heavy time investment. It entails letting go of some dearly held beliefs in favour of cold hard science. It means being realistic _and_ optimistic.
In a recent email exchange I had with a very smart guy, he said to me:
Reaching parents through the Acceptance approach how to distinguish what needs to change in society vs. what actually makes sense to attempt to change at the individual’s level, and helping them redirect all that energy towards both goals in appropriate balance, is the long-term solution.
Because you see (gasp!) parents who follow an acceptance based approach do not see their kids as utterly perfect with no need for any intervention whatsoever. That is not realistic. It is not parenting. That is abandoning one’s child to the vagaries of fate.
My daughter is far from perfect (in that developmental sense of the word). She needs educating. She’s being educated. She needs to develop life skills. We are developing life skills. Sometimes she’s genuinely naughty. When she is she’s punished. She’s not naughty due to her autism. She’s naughty because she’s six and six year olds have a capacity for naughtiness.
However, we also see the need to try and bring about development in society as well as development in our children. Autism is still seen primarily as something that primarily affects children. It isn’t. Autism is poorly understood on many levels. Educational resources for autistic children and adults are very bad in the UK and not great in the US. The idea of a spectrum of autism is still to gain widespread acceptance. The idea that the word ‘spectrum’ might not be the right concept has barely registered.
So – yes, autistic children need their parents input. Society also needs their parents input. Society also needs autistic people’s input.
My email correspondent went on to ask about how we could get people – parents new to diagnosis – to work for their children and also in society.
My answer was that education was key. How to reach parents _before_ diagnosis. Why?
The very first time ‘autism’ is used to a parent it comes from a diagnosing doctor. Because autism is still poorly understood – even by Doctors – the diagnostician may tell a parent that their child will need institutionalising, sometimes drugging, sometimes that they have no functional future. I don’t like John Best Jr very much, but the first time I heard that his diagnosing doctor had called his son a vegetable, I felt pity for him and his son. How could a doctor be so obtuse?
So when a parent hears that (and it still happens an awful lot) 9 times out of 10 a voice in their head adds on ….”unless you can cure them”…. and thus through a combo of diagnostician and the ‘hope’ of cure, autism as a medical disorder is the predominant way a parent becomes familiar with autism.
Very rarely does a parent have the strength after hearing that to keep an open mind. Find the cause, find the cure. Do not be autistic, do not collect £200. What we heard when Meg was diagnosed wasn’t anywhere near that bad and yet that’s the path we went down.
And what happens when a cause is supposedly found? This is the crucial time. This is the point a parent can become an autism advocate or an advocate for their autistic children. For a lot of people, vaccines are the cause. MMR or thiomersal based. Or mold. Or french fries. Or aliens. Or whatever. You can stop and say ‘my god, I can’t believe this’ and be swallowed whole by what I can only describe as maelstrom of anger, blame, transferred guilt and panic. SoapboxMom wrote a good post about the self-destructive side of anger and how it can turn on you and consume you. There are a few people I can think of who are very close to that point.
I’m going to quote from something yet to be published. I’ll be writing more about it in a few months but for now, this passage sums up why I think a lot of parents are angry.
I am not sure why people are so resistant to the idea that true autism rates may have remained stable over the years, and that there is no real epidemic. Perhaps they don’t want to give up on the hope that, if only we could find the cause of the ‘epidemic’ we could help these children. We could eliminate the toxins, hold big corporations accountable, do something to reverse the trend. If there is no real epidemic, we might just have to admit that no one is to blame. Their desire is understandable. But we cannot find real solutions if we’re basing our ideas on false premises and bad science.
Real solutions. How do we as a society want to treat autistic people? That question needs a solution. What is the best way to help an autistic child feel accepted, to nurture their talents and address their needs? That needs a solution. What is the best way to help an autistic child become an autistic adult with a feeling of self worth? That needs a solution. The cause of these issues didn’t originate from the barrel of a syringe and the solutions won’t come from blaming people and conspiracy theories. It won’t come from the total medicalisation of autism.
Maybe the solution might come from people who are autistic? Maybe if we listen to them, we can hear about what helped them. What was no good. What hindered them. What they care about as individuals _and_ as a particular group of people.
And maybe there are some truths that are unpalatable which must be faced.
I believe that science progresses no matter what. For good or bad, if a scientist wants to answer a question, then they will find a way to answer it or add to the body of knowledge so a like minded scientist can answer it in the future. Science has brought us the internet and nuclear bombs. Non-invasive surgery and landmines. Streetlights and the AK-47. At some point, it will bring us a genetic test for autism. I believe it is inevitable and that no matter how I might personally feel about it, or how much I might worry about how it is employed, it will happen.
I think that for things like this that protesting the development of such a thing is futile. We need to turn what could be negativity into a way to employ this. Our challenge should be to help people realise that autism doesn’t have to be something that requires a termination. Maybe a genetic test can be seen as a window of opportunity to educate parents who know nothing about autism into potential parents of autistic children forearmed and ready to work with their children and use what anger they may have against a system that is not conducive to accessibility.
Left Brain Right Brain 
Fantastic post Kev! Bravo.
I don’t where you found that yet to be published quote but it’s wonderful and I’d like to read more where that came from.
Hi Kevin.
Heard you speaking to michael (Boll) on autismpodcast. Pretty much agreed with everything you were saying. I’ve been proceeding (I teach students on the spectrum, while just as you I wonder just how useful the term spectrum is) with an idea that “reception” is what is critical; but acceptance seems similar.
What I find is, that when I’m postured and configured to usefully receive my students, that the mainstream can start having fundamental problems with me. I sometimes see that as taking on (becoming) the autistic by professional election; and again I think that seems close to what you mean by advocating for autistic people.
One thing we may or may not have agreement on, is just how our reception of an autistic person can actually shape who they are. My vantage point leaves me thinking how individual teachers or parents actually shape autistic children over years: where an essential plasticity often strikes me about the autistic.
So, for example, your “accepting” of Meg is not just an “allowing through” of a person who exists, it is also a creating of a person (over a development cycle) through a sustained reception we term acceptance (maybe something of an “inviting out”).
I look at medicalised and other views of the autistic, in terms of the cerebration (deep cognition) they provide for or induce in those who subcribe to them.
I then look at how someone running such cognition is placed to receive (give reception to) a particular (autistic) student (or son/daughter/child). The crux (it seems to me) is how consonant that reception (with its running cognition) is with the cognition the child needs, to occur and progress (and both autistically).
If the child has to fight their way past that reception and cognition, to have the (autistic) occurrence they need: then that child is being improperly received; and things can fail to go well for that child.
Anyway. It was good to hear you speak with Michael. I get a great deal from what gets created as podcasts around Michael: often with their very American tones; which is wonderful. What you were saying almost sounded British by comparison; and resonated with what moves as thought and feeling in myself.
Autismhub is an incredible resource. Amanda is amazing: I had that same happy surprise.
Take care
Colin
I hope it’s all right if I borrow your “reaching parents before diagnosis” line—there is a lot in it.
Wow, this is a WONDERFUL piece, as usual. This really hits home, big time. I am often accused of failing my child, or harming her future because I openly say I accept her autism. What those on the other side don’t know, is that because I have accepted, I truly feel my daughter is flourishing. Because I don’t spend every waking moment searching for causes and cures, I am able to devote my time & energy to her needs.
Accepting autism & your autistic child is not a ‘sink or swim’ deal–because I’m not looking for blame, does not mean I’ve simply let my child left to her own devices. Our goal is to create as comfortable an environment for her, give her the sensory exposure she needs, the time, etc. We work with several professionals (no ABA) who are helping us learn how to parent our unique daughter. The key, as you said, is education–both to help our daughter & to move society forward.
I also appreciated what you wrote about your daughter being naughty because she is simply 6. That is SO key…not every single thing that an autistic child does is because of autism. A lot of these parents are so busy staring at the big “A” on their child’s head, that they forget to see the average or usual things their beautiful child is doing.
Kev,
I so agree with you on the genetic testing to provide a window of opportunity…what a hopeful, lovely thought!
Hi Kev,
My first paper for my MEd dealt with this issue quite thoroughly. If you want to see it, there’s a copy in AutAdvo file archive. 🙂
Nice article you did here, and the podcast was great.
🙂
Great post, Kev.
I think it is possible to reach parents before a diagnosis. Most parents probably do some homework before they ask a doctor.
As far as what medical professionals tell you, and what to do with that, once genetic testing has proved a given “disability”… My older son was known to have Downs by my 6th month maybe. They were cautiously optimistic, in a way that might’ve had someone else considering termination. I knew very well, by the experience of teaching CD-S art classes, that Downs was NOT the end of the world. Would certainly NOT require institutionalization. Did NOT preclude him from walking, talking, and knowing his family. (that one they said … in 1998!!)
So ironic, that he is now the “easy” one. Nearly toilet trained by 6, speaking words we understand, eager to please. All things our little one is not at that age. No one ever expects we cure Bud’s Downs, just do the best we can for his happy, healthy life. I want parents to know they can love their Autistic children the same way.
I am SO thankful to have been shown the Autism Hub, because it supports what I have felt all along. It is hard to stick with your parental convictions sometimes, when you get SO much information against it. It’s like propaganda out there, and it is very hard to ignore, when it is SO pervasive.
I’m gonna slink off my soapbox now. There are lots more qualified people here to speak. I’m just happy to have you all here.
“I am not sure why people are so resistant to the idea that true autism rates may have remained stable over the years, and that there is no real epidemic. Perhaps they don’t want to give up on the hope that, if only we could find the cause of the ‘epidemic’ we could help these children.”
The way the “epidemic” hype affects scientists is if they keep promoting it they are more likely to get funding for something they are promising to try to come up with a “cure” for. It’s all very cold blooded. Dr. Fombonne who is trying to show how there hasn’t been an epidemic said that scientists say to him, jokingly or half-jokingly “Hey don’t mess with the epidemic, we’ll lose our funding.” or words to that effect. He said it at the MIND institute and it’s on record on one of the two video tapes they have of him speaking.
He said it at the MIND institute and no one stood up and told him otherwise, that they aren’t gaining anything from perpetuating the fear of an epidemic… Fear of an epidemic caused by something controllable, like a specific chemical that is easily removed from the “environment’, is powerful incentive for gov’t agency to fund studies. Some scientists are seeing it as a cash cow as much as they are seeing it as a way to halt an epidemic they might think might be there… and thus enter hysteri, no, history books as the brave guys and gals who stopped the epidemic!!
Of course, the parents end up getting terrorized in the process, what do I keep my baby safe from to keep him from becoming a soul-less zombie?
Yes! Yes! I hear you loud and clear. Education before diagnosis is so important. We were lucky that our pediatrician said Autism before the diagnosis that came 10 months later. So several months into the wait times we already knew what we were dealing with and how we would approach it.
By the time we got our official diagnosis all I could think of to say was “great, now we know he’ll get support in school”. The psychologist were shocked that we didn’t break down and cry while they handled us with kid gloves and told us all the “bad” news. Education before hand saved us.
Spectrum has become an ugly word for me. My son started as severe and has now progressed so that he would not be placed severe on the spectrum now. Probably moderate. But what does that mean? Isn’t it enough that he was Patrick at age 3 with x issues and now he’s Patrick at age 4 with different issues??? And why should he be less or more functioning than one of his peers? High and Low funcioning labels drive me batty.
My son can also be naughty because he’s 4. I’m getting good at telling when the behaviour is autistic in nature and can’t be helped (sensory or otherwise) and when he’s just being 4 years old (and therefore needed his naughty behaviour disiplined). I’ll be honest that it took some time for me to be able to distinguish the difference.
Genetic testing scares me. A lot! I think the world needs people like my son. I think he makes it a better place. But I follow the thought process that this might give us an opportunity to educate potential parents of autistic children before birth.
Great Post! I enjoyed reading it. You’ve made me do a lot of thinking about my own thoughts today.
“I want parents to know they can love their Autistic children the same way.”
Suzanne–your experience & insight with Down’s Syndrome, as well as with autism, was great to read. I have often found it odd that parents I have met whose children have diagnoses like Down’s, CP, etc. are allowed to accept & move on, yet we are not. In fact, very often these children are depicted as gifts to be treasured & how wonderful the life experience it is to raise them. A stark difference, as you pointed out, to the propaganda against autistic kids. It is generally accepted that as parents we not treasure these kids or feel like we have a great future raising them. It is okay for us to feel bitter & if we are not using ridiculous ‘cures’ or protesting the thing that caused the autism, we are terrible parents.
Perhaps, as your experience has taught us, a change is occurring within society & before too long, our autistic kids will be given the same hope that other children are given. I really am encouraged by all the parents I am meeting here & elsewhere who feel the same. We still have a long way to go, but 1998 was not that far away, when you were told such wrongs about raising an child w/ ds. Lastly, I think you are an amazing mom!!
Suzanne – your comments are fascinating coming from a perspective of parenting a child who is Downs. Could you mail me privately? I have lots of questions about the idea of acceptance in the community you are a part of.
Colin – there’s a very good reason I sounded British ;o)
Thanks for your comments – very interesting :o)
Kristina – borrow freely :o)
SL – you said:
_”Accepting autism & your autistic child is not a ‘sink or swim’ deal—because I’m not looking for blame, does not mean I’ve simply let my child left to her own devices.”_
Which is very true. There is a type of parent doing the more extreme Biomed who considers _anyone_ not also doing this extreme Biomed (Chelation, Lupron, HBOT etc) as negligence. I don’t know why but what I do know is that listening to people who claim to have all the answers is dangerous in the extreme.
MumKeepingSane – I know what you mean about genetic testing. It worries me too. I am cynical about how such a tool would be used given that there seems to be an uncomfortable eugenics agenda in a lot of ‘cure’ led organisations and a lot of awful ignorance regarding what it is to be autistic on behalf of the people who would be wielding a tool like this.
Unfortunately, I think its development is inevitable. I hope that we – as advocacy groups – can spend time on raising awareness about the issue and making sure it is not used lightly or glibly or from ignorance.
As you may know, I dislike the term “intervention.” I do not think that using parenting techniques that are designed for autistic kids, on autistic kids, is anything that deserves such a heady title. To me, it is teaching… facilitating development with techniques known to work on the type of child in question. They seem unusual and heroic because the tried and true techniques are so ingrained, and so much easier and less intensive, but really, they are simply parenting techniques that are tailored to the autistic child. If that is intervention, then why is it not intervention when the normal child, who starts off no less helpless than an autistic infant, is given parenting that is tailored to the normal child?
Kaiden – I agree. Amanda has said the same thing to me before when I was guilty of using ‘intervention’ to describe what we’re doing so I try and avoid that for the good reasons you raise.
You wrote:
“I am not sure why people are so resistant to the idea that true autism rates may have remained stable over the years, and that there is no real epidemic. Perhaps they don’t want to give up on the hope that, if only we could find the cause of the ‘epidemic’ we could help these children. We could eliminate the toxins, hold big corporations accountable, do something to reverse the trend. If there is no real epidemic, we might just have to admit that no one is to blame. Their desire is understandable. But we cannot find real solutions if we’re basing our ideas on false premises and bad science.”
Perhaps because the theories behind stable rates of autism over the years have no more evidence than goofy mercury conpsiracy theories?
Where are all the adult autistics if the prevelance is stable?
Actually, the studies conducted on prevalence are sound (Chakrabarti and Fombonne for example).
As for adults, I and others have discussed this many times and I’ve just posted a related comment on a thread of Autism Diva’s on this subject.
Here’s the meat of my old post on the subject:
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A 2004 audit on ASD in Scotland tried to present on overall report on the ‘state of ASD knowledge’ in Scotland. Most striking to me as I read the report was the comments that each local authority/NHS partnership had regarding an answer to the following question:
*Argyll & Bute Council*
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.
*East Renfrewshire Council, NHS A&C and Greater Glasgow NHS*
…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.
*AYRSHIRE AND ARRAN*
It is apparent that information collection and collation for adults is almost non existent.
*DUMFRIES AND GALLOWAY*
There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.
*GRAMPIAN*
There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.
*HIGHLAND*
It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.
*LANARKSHIRE*
The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.
*ORKNEY*
Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.
*Perth & Kinross Council*
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.
Pretty interesting stuff I think you’ll agree. This means that about 45% of the areas questioned said that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis.
A secondary question also of note asked:
Just about every area reported an increase and all areas attributed to either, reclassification of some people (especially adults) from Learning Difficulties to ASD, increased awareness of ASD generally and in medical circles and improved diagnosis.
———————-
and my comment on Diva’s recent post
————————–
Interesting report:
“In conclusion, there is no question that more information is vital for the *surprisingly large population of persons aging with autism*…”
And here’s one of the few stats on US developmental disabilities in the elderly:
“…It is estimated that four out of every 1,000 older adults have a developmental disability. The total number of elderly persons in the United States who are developmentally disabled is estimated to be as high as one-half million persons. This population is expected to double by 2030….”
I’ll also add my usual anecdotal evidence of my two (now deceased) born pre-1920 relatives who were autistic.
————————————-
Autism Diva’s whole post is relevant to your question also.
Where are all the adult autistics if the prevelance is stable?
You probably have crossed paths with adult autistics in your daily life, especially if they are adept at “passing” as normal.
I’ve been brooding on this issue, Kev. It’s good that you’ve blogged about it.
“The very first time ‘autism’ is used to a parent it comes from a diagnosing doctor.”
And there in is the first issue I raise. Why the hell is a medical practitioner (who usually has very little knowledge of psychological development) doing developmental diagnosis?
“Because autism is still poorly understood – even by Doctors – the diagnostician may tell a parent that their child will need institutionalising, sometimes drugging, sometimes that they have no functional future.”
Reason I ask is because the above is the usual result.
“I don’t like John Best Jr very much, but the first time I heard that his diagnosing doctor had called his son a vegetable, I felt pity for him and his son. How could a doctor be so obtuse?”
I really have very little sense of fellowship with Besty, it’s true, and for good reason. But this point got to me, too. What the fuck was that doctor thinking? I mean, really… a medical practitioner with what seems like sod all understanding of autism, beyond the ability to use the diagnostic criteria in a clear-cut case, turns round and calls a kid a ‘vegetable’?
Had any medic called my daughter a vegetable, he (most medics hereabouts are ‘he’… Finland hasn’t caught up with the rest of the world yet) would have found himself flying through the air with my boot stuffed tight up his arse hole.
A psychologist would never have commented in such a way about Sam.
“So when a parent hears that (and it still happens an awful lot) 9 times out of 10 a voice in their head adds on …’unless you can cure them’…. and thus through a combo of diagnostician and the ‘hope’ of cure, autism as a medical disorder is the predominant way a parent becomes familiar with autism.”
Exactly.
And autism is not a medical issue: it is *developmental*, and needs to be understood *psychologically*, and worked with *educationally*. Medicine has, apart from issue relating to the sorts of things that medicine is really useful for (like injuries, disease states and so on), nothing to do with autism.
Except for painting too gloomy a picture.
Hi Kevin,
I want to thank you for your blog. I am the mother of many autistic children. They are all biologically related and that in itself answers the genetic link.
Thank you for clarifying Soapbox Moms blog. She is not angry at autism, just the people who insist on being mad at anyone on the accepting side.
I thought you were American too [even with a name like Kev for goodness sake] but the use of the word ‘naughty’ condemned you. We Americans never use such politically incorrect terms!
Best wishes