Autism and autism – two shades of the same thing

30 May

I’m quite lucky really. Once my ex and I separated I started seeing someone else. This other person also has a child with autism. Now that we live together I have experience of two shades of autism.

My own child has profound learning difficulties as well as autism. My step child’s issues are more to do with sociability and her environment. My own child attends what is known in the UK as a Special School. My step child is in a mainstream setting. It is felt by all sets of parents that both children are very much in the right environment.

As a result of this exposure to two shades of autism, my own views of what autism is have altered a little in some ways and in others, become more firmly held. The way they have altered is that I am now, as noted by some, more amenable to seeing autism as one more thing than a difference and a disability – it _is_ also a medical issue. What do I mean by that? Well, for example, my step child has a different set of issues under the terms of the DSM IV (and the DSM V) as my own child. However they are both still fully and diagnostically autistic. Before, I would’ve simply accepted this as ONLY a different shade of the same thing. Now, I see it as a difference which is medically diagnosable and also disabling in some ways and very enabling in others (my step child is a maths whiz, far far ahead of her NT peers).

In what ways have my views on autism become more entrenched? Well, being responsible for two children on the spectrum who are markedly different from each other in diagnostic issues might have led me to doubt autism as a valid diagnosis at all but it is the similarities they both have with each other that leads me to believe that I am right to consider autism as something more than _just_ a disability. Is it a disability at all? Yes. Autism has disabled both my child and step-child. Is it a difference? Yes it is. These two kids are different in positive ways.

There are people who take me to task for suggesting that I don’t believe autism _must_ be cured. Thats fine, they’re entitled to their opinions. I would suggest however that they haven’t considered the shades of grey that exist between two people with autism, let alone the whole huge spectrum of differences that must exist.

They also take me to task saying that, if a cure ever existed I wouldn’t cure my child unless she asked me too. They take the literal view that because my child is non-verbal she can’t ask, therefore I am denying that cure. There are of course a multitude of issues with that stance. First is the face that kids – even (shock) autistic kids – develop over time. Just because my child is non-verbal _now_ doesn’t mean that my child will _always_ be non-verbal. Second is that fact that non-verbal doesn’t mean non-communicative (See Carly’s Voice for a prime example). Third is the face that my child’s autism is not the greatest challenge xe faces. That challenge is her learning difficulty (intellectual disability in North America). I could remove autism tomorrow and still my child would be profoundly affected by a disability.

Things are never cut and dried. Black and white. The answers to a lot of issues (not all) lies somewhere in the middle. For those who immaturely expect their to be AN answer, good luck to you. I hope you find your answer. Don’t however, think that your answer is THE answer. I have no idea who said the following but I think its spot on: “follow the man who seeks answers, flee from the man who has found them.”

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37 Responses to “Autism and autism – two shades of the same thing”

  1. Stuart Duncan May 30, 2011 at 19:43 #

    As I’ve said before, autism is neither a gift nor a curse. It simply is what it is.
    It’s hypocritical to tell everyone “when you’ve met one autistic, you’ve met one autistic” and then go around telling everyone else how they’re supposed to view autism.

    Ari Ne’eman would have the world think that every person with autism is a savant.
    Meanwhile others like AoA would have the world think that they’re damaged and defective, incapable of having a life.

    I’m quite sick of people telling everyone else how to think based on their own limited experience.

    It’s not black and white. It’s called a spectrum for a reason.

  2. Sullivan May 30, 2011 at 20:01 #

    Kev,

    not meant as a criticism, but aren’t they both your “own” children now? Often times language doesn’t give us all the tools we need.

  3. Kev May 30, 2011 at 20:06 #

    Indeed – but I was looking for a way to reference them without mentioning their names 🙂 exposure to the John Best’s of this world they don’t need.

  4. Meredith May 30, 2011 at 21:35 #

    Thanks for sharing, and the author of that illuminating quote is Vaclev Havel.

  5. Kassiane May 30, 2011 at 22:04 #

    @Stuart: I have known Ari a long time (since long before ASAN) and I know with absolute certainty that isn’t his view.

    IM(NS)HO, autism is a way of being. It comes with disabilities. It comes with gifts. It comes with aspects that are neither disabling or gifts, they just are. Giving myself permission to be my autistic self, instead of a crappy imitation NT, is the greatest gift I’ve ever gotten.

  6. Autism and Oughtisms May 30, 2011 at 23:06 #

    Most of us learn about autism alongside learning to understand our own child, so in our minds (quite understandably), autism is always understood in reference to that child. Throw in the well-known isolation that many of us parents experience with children on the spectrum, plus the advocating fights we have to get involved in to get our kids the services and understanding they need, and you have a good recipe for people effectively shouting at each other “my kid is autism, my experience is the authetic one” “no my kid is autism, you are deceiving / deceived”.

    As a parent new to autism, you start off in dialogues trying to explain autism to those who have no experience or knowledge of it; our families and friends don’t understand. It is only later that we typically start to meet and interact with other parents of autistic children and realise the full extent of the spectrum and the legitimate variation in turn of attitudes towards it. This process of understanding the variations, is stunted if we find ourselves only talking to other parents with children at the same extremes of the spectrum (which understandably happens).

    We sometimes feel that we must fight for our own attitudes and experiences to be seen as the only genuine one, because it makes it easier to advocate for what is in our own child’s best interests. But that’s where maintaining context is so important: In a IEP or a therapy meeting, it makes sense to talk re our and only our child. In the wider world, it’s not that straight-forward.

  7. Sharon May 30, 2011 at 23:17 #

    I agree Kev and suspect this wide spectrum of difference under the umbrella of ASD is why the DSM keeps revising it’s diagnostic criteria for Autism.

    I read an interesting thread on an Australian ASD blog yesterday that some here may find of interest. http://www.crackingtheenigma.blogspot.com

    Warning, Harold is having a rant over there.

  8. Autism and Oughtisms May 30, 2011 at 23:48 #

    Sharon, thanks for the link, interesting post and discussion over there.

    I find it interesting that Harold thinks the new criteria will push some of the more severely effected off the spectrum newly-defined, yet others are pointing out (elsewhere) that the new criteria forces the less severely effected off the spectrum because of criteria D: “Symptoms together limit and impair everyday functioning.” Looks like a tightening at both ends of the spectrum, perhaps? Still nutting out the details for myself.

  9. stanley seigler May 31, 2011 at 01:45 #

    [kev say] I’m quite lucky really.

    indeed and so am i to have a great teacher in my spoiled only child…my non verbal daughter…and the exposure to the hi functioning, savants, etc, folks on the spectrum here and elsewhere.

    tho most seems to recognize the shades…it is difficult to understand how/why there are so many apple/orange discussions.

    [kev say] Just because my child is non-verbal now doesn’t mean that my child will always be non-verbal.

    becoming verbal is one “cure”…and as believed mentioned…there should be orders of magnitude more research on the innate ability many on the spectrum have to learn w/o formal education…eg, carly and mid 60s “talking typewriter…

    stanley seigler

  10. Harold L Doherty May 31, 2011 at 10:47 #

    Sharon, I take it that your definition of a “rant” is a commentary that disagrees with your ideological views?

    My commentary at that site was a response to the site author’s discussion of a commentary on my own blog site. The site author subsequently contacted me and we had a polite and positive email discussion about the serious issues raised by the two commentaries.

  11. kristina May 31, 2011 at 16:19 #

    thanks for the thoughtful post, Kev. We’ve ‘only’ got Charlie but getting to know some students on the spectrum in my classes has shown me multiple shadings of many greys.

  12. stanley seigler May 31, 2011 at 19:27 #

    perhaps repeat comments from another LBRB thread appropriate here.

    the repeat:
    the spectrum is made up of all degrees [shades] of individual autism…which raised the question: how should cures be applied to the non-verbal children/adults. cure/dont cure should always be discussed within the parameters of degree [shades] (eg, verbal v non-verbal)

    it make little sense to discuss verbal hi functioning cure/dont and lo functioning non-verbal cure/dont as one and the same…sadly we seem to discuss these apples/oranges issues in the same breath.

    [Stuart Duncan (SD) say] I’ve yet to hear from an Autistic that has found their voice (through typing or otherwise) that they wish that they could be cured.

    you might listen to those who have been committed to JRC (judge rotenberg center shock, torture, school)…i strongly disagree with JRC programs but bet the farm most of the autistics there would welcome a cure.

    also SD say: (Carly’s voice), as an example. She can not speak, she can type. Yet she does not seek nor desire a cure.

    getting into semantics…but that carly found her voice could be considered a cure…so not sure what carly (anyone) considers a cure.

    “It’s about us”

    INDEED about those who have been there done that…but how do the non-verbals tell us about being there.

    stanley seigler

  13. RAJ May 31, 2011 at 20:26 #

    Harold;
    I don’t think you have to worry about severe intellectual disability being removed from DSM-V. In fact, it is the aspegerians that should worry.

    The first field trial that compared DSM-IV-tr (2000) to the proposed APA’s set of diagnostic criteria has been published. They found that the proposed DSM-V criteria was less sensitive in identifying People who meet diagnostic criteria for high functioning autism and Asperger Syndrome than DSM-IV-tr (2000) diagnostic criteria.

    http://www.ncbi.nlm.nih.gov/pubmed/21621142

    As far as severe autism is concerned a new twin study presented at the recent IMFAR conference reported that severe auitsm is not heritable nor is it dimensional with ‘autism’ being the tail end of a continous distribution of autistic traits as the proposed DSM-V proposal appears to define whatever autism is or is not.

    http://imfar.confex.com/imfar/2011/webprogram/Paper8068.html

    Isabelle Rapin gave a thoghtful commentary on the misdiagnosis of autism in comentary at SFARI Autism blog:

    https://sfari.org/news-and-commentary/open-article/-/asset_publisher/6Tog/content/isabelle-rapin-lessons-from-my-clinic

    .

  14. Casdok May 31, 2011 at 21:16 #

    This is why i prefer the term ‘preverbal’.

  15. Moderation May 31, 2011 at 23:05 #

    I have been following this “discussion” between Kev and Harold for a while trying to get the gist of what the issues are. The question I have for Kev is: Do you view being autistic the way some people view being deaf? In that some view being deaf as a “culture” (sorry for the imprecise word) of its own and will not accept cochlear implants. I understand the idea that those with Asperger’s may be the small percentage of individuals beyond an arbitrarily drawn line on the bell curve of social skills, but the same can be said of those on the bell curve of obsessive/complulsive behavior. I have often heard it said that it is when a behavioral issue interferes with an individuals ability to function day to day that it becomes a diagnosable condition that should be treated. Thanks for your insight.

  16. Sharon June 1, 2011 at 00:08 #

    Harold I understood the intention of your comment on the abovementioned blog. But it does read like an angry rant. Perhaps you are not aware that your comments usually do? Some feedback for you to consider.

  17. McD June 1, 2011 at 01:10 #

    @Stanley, I know you are quoting Stuart, but while I totally agree that Carly is inspiring and can teach us a lot about nonverbal autism, I don’t think she would agree with some of what has been said. This is from her website:
    http://carlysvoicecom.powweb.com/

    “Q: Do you ever feel sorry for yourself because of your autism?

    A: I think people are going to be mad at me if I tell the truth. One of my mom’s friends said she always wanted to be like every one else because she felt different.

    I think that is kind of what I feel like.

    I would like to be like a normal kid.

    I do like things about being me but I still wonder what it would be like to be like my sister.”

    And Carly had ABA/EIBI from a young age, so technically she didn’t just up and start typing one day (although there was a specific day where the circumstances motivated her to type her first two words that she had learned previously, thus starting her communication by typing) – so she did have ‘formal’ teaching.

  18. Sharon June 1, 2011 at 09:05 #

    What a sad shame Carly thinks she has to consider other peoples feelings of anger in sharing her own point of view on the matter.

  19. Concerned Mom June 1, 2011 at 11:56 #

    I think it’s terrible that Carly has to worry that people will be mad at her for feelings that others, especially teenagers, have every day. It’s a perfectly normal, human feeling to wonder what it would be like to be someone else. We have all wondered the exact same thing, for all different sorts of reasons. Carly’s reason just happens to be because she’s autistic. Her reasons ( that she is autistic, though there could be other reasons that no one knows about. We all have secret wishes and desires) do not invalidate her feelings nor make them any less human. Her feelings should not be a source of worry that others will be mad at her when these same exact feelings of curiosity, when exhibited by others, are seen as a normal part of being human.

  20. Barbara June 1, 2011 at 12:41 #

    In my own PhD research, the 4 students reported feeling ‘different’ at school on many levels. Most of them had been bullied, and it was clear that some of their views about their spectrum condition had been constructed by others. For instance one boy kept repeating, ‘I am annoying’. While they claimed not to mind being different, and claimed of the bullying by others ‘I just ignore it’, sometimes their defences dropped and one boy said that he would like to change the way others perceived him. A girl said, ‘I would like to be understood and understand more’.

    My own view, following my research, is that although those who function more successfully appear to have few problems compared with those with associated intellectual impairment, this may be a mirage. It’s just that they’ve developed strategies for almost coping. An interesting paper by Sue Leekam et al draws attention to what I believe are core characteristics of what we call ‘autism’ – sensory differences (this is the Local Processing Bias theory of autism) had this to say:

    In the current study, the high functioning autism group had more sensory symptoms overall and were more affected by multiple sensory domains than the language impairment comparison group. In contrast the low functioning autism group did not differ from the developmental delayed group…
    Surprisingly, high functioning children with autism also showed a high frequency of proximal abnormalities. Proximal abnormalities are associated with low developmental immaturity, yet over 35% of HFA children had abnormalities in virtually all of the proximal categories and did not differ from low functioning autism group in the frequency of these features.

  21. Barbara June 1, 2011 at 12:47 #

    I’ll continue with an extract from my thesis which summarises this:

    It should be noted that ‘proximal’ as used in that study (Leekam et al, 2007) is descriptive of all sensory functions and motoric functions which are neither auditory nor visual. This finding, which the authors describe as ‘striking’ appears to suggest that when matched with ‘matched others’, even ‘matched others’ with specific learning difficulties, the sensory profiles of the apparently higher functioning children on the autism spectrum are similar to those of those thought of as low-functioning. A similar finding was that of Hilton et al (2010) in which the responsiveness of the proximal senses in High Functioning Autism subjects (n=36) was the strongest predictor of greater social impairment. The authors conclude (Hilton et al, 2010:1) that their findings suggest ‘the relationship between sensory responsiveness and other autistic traits is more important than previously recognised, and addressing sensory modulation issues in children with HFASD may be more critical than previously understood.’ This conclusion reflected that of Lane et al (2010).

  22. stanley seigler June 1, 2011 at 17:22 #

    [Barbara say] In my own PhD research, the 4 students reported feeling ‘different’ at school on many levels…etcetcetc,

    thanks, interesting

    what did the research yield re plight of the lo functioning, non verbals…what was determined re the innate ability…some/many (maybe all) have to learn/communicate without formal education…eg, carly and those described in NYT, 1965, article: “what the talking typewriter says”…ie; those considered material for the institutions.

    much time and lives lost due to little or no follow up research on the mid 60s talking typewriter…40 years and no follow up to my knowledge…anyone know of any…

    stanley seigler

    ps. Talking typewriter article excerpts

    Talking typewriter = Edison Responsive Environment = E.R.E.
    NYT 09may65 by maya pines

    …inside the booth, she was a very relaxed, gay little girl; outside the booth she seemed very withdrawn…

    …I [Dr Mary Goodwin] thought here was surely something that ought to be tried with autistic children…

    …a 6-year-old boy [jackie] with an unusually severe disturbance was brought to the hospital clinic. he had been excluded from his school because he was unmanageable. completely withdrawn, jackie spoke only gibberish and often flew into tantrums, beating his head against the floor. Dr. Goodwin characterized jackie as autistic.

    …three psychiatrists and two psychologists had diagnosed jackie as autistic…

    …Dr Goowins recalls jackie’s first encounter with E.R.E.: […] during the next half hour, without anybody in the booth with him he typed about 20 lines of apparently random letters de, some of which recognizable words: ivory liquid, Clorox, arrid deodorant, mr clean and other brand names from tv commercials. he was completely absorbed in what he was doing.

    …we really didn’t know what we had here, she says, except that it was very interesting…

    …in the next occasion jackie said “want to type” he continued to two or three times a week…once he played with the carriage return, and then in the middle of the blank page he carefully centered the following three words: BOXED, TAPED, WARPED

    …within two months of jackie’s first typing lesson his father reported the boy had far fewer temper tantrums. jackie was also beginning to show some interest in the child next door, whom he had previously ignored…

    …he has now paid nearly 70 visits to the laboratory. during this time he has changed from a non communicating, wild looking, often violent child to one who for long periods seems perfectly normal. although he is still far from well and his improvement may be only temporary, he is no longer a candidate for the state hospital…

    …the rapid change in his behavior is particularly striking since most of the other methods used to reach such autistic children have involved prolonged, round-the-clock relationships with therapists.

    …Dr Goodwin says, something perfectly extraordinary has been going on in front of our eyes and she has presented her clinical reports before two medical groups…

    …one boy of 14, a nearly mute schizophrenic who had failed to improve during 10 years of intensive psychiatric care, began to type, sing and talk when left alone with the E.R.E. he acted out an incident which according to his records happened to him when he was 2-1/2. after 15 hours with the E.R.E. he had improved to the extent that he was able to reply, when [saved to here] asked where he was going, “to cooperstown, to read a book.”

    http://f1.grp.yahoofs.com/v1/8FPmTRZkCTHNq1cMlJXkFC_-ay-D7fQd59Tiv7n3xhVOKfzMh4EGX_Pd3i3oud5mTXKL4gS9_WJN8aEUt9Qp5g/NYT%20Talking%20Typewriter.pdf

  23. Barbara June 1, 2011 at 18:09 #

    I LOVE your post, Stanley! Very much in the line of Asperger and Kanner!

  24. Brian Morgan June 2, 2011 at 16:58 #

    Nature journal dated 26th May 2011 contained a number of articles about autism, and these have been mentioned in the press and on other blogs – don’t recall seeing mentions here. What doesn’t seem to have been commented on is an on-line Neuroscience research letter by Voineagu et al, the abstract can be found here: http://www.nature.com/nature/journal/vaop/ncurrent/abs/nature10110.html

    Here’s the intro to the abstract: “Autism spectrum disorder (ASD) is a common, highly heritable neurodevelopmental condition characterized by marked genetic heterogeneity1, 2, 3. Thus, a fundamental question is whether autism represents an aetiologically heterogeneous disorder in which the myriad genetic or environmental risk factors perturb common underlying molecular pathways in the brain4. Here, we demonstrate consistent differences in transcriptome organization between autistic and normal brain by gene co-expression network analysis. Remarkably, regional patterns of gene expression that typically distinguish frontal and temporal cortex are significantly attenuated in the ASD brain, suggesting abnormalities in cortical patterning.”

    I have a reader subscription to Nature so I can read the full article. It’s complex and outside my area of expertise for me really to make comments about it. If there’s a reader here who might be able to read, digest and make observations I’m willing to forward a full copy to an email address on condition it is not re-published.

    • Sullivan June 2, 2011 at 23:46 #

      Brian,

      I hope to contact the author and write something up on this. This week has been basically hell so far.

  25. stanley seigler June 2, 2011 at 18:46 #

    [McD say] @Stanley, I know you are quoting Stuart, but while I totally agree that Carly is inspiring and can teach us a lot about nonverbal autism, I don’t think she would agree with some of what has been said.

    not sure your/my opines important…guess we will have to ask carly and others who have experienced: “a specific day where the circumstances motivated her to type…”see previous excerpts from talking typewriter.

    much more research needed re “autism intelligence.”

    stanley seigler

  26. stanley seigler June 2, 2011 at 18:50 #

    have posted response to barbars several times get following:

    Duplicate comment detected; it looks as though you’ve already said that!

    but comment not posted.

    stanley seigler

  27. Barbara June 2, 2011 at 21:48 #

    Sorry Stanley, not my fault!

  28. Barbara June 2, 2011 at 21:49 #

    @Brian, the attenuation is the issue.

  29. Sharon June 2, 2011 at 23:45 #

    Brian I hope someone here takes you up on that offer, sounds most interesting.

  30. Brian Morgan June 2, 2011 at 23:56 #

    I’ve just emailed the corresponding author. There are some key points in the full paper, I think.

  31. stanley seigler June 3, 2011 at 18:16 #

    [barbara say]…in the line of Asperger and Kanner!

    COMMENT
    thanks for kind words…any resemblance to Asperger and Kanner purely coincidental and minimum…

    and thanks for link to your thesis. CLIPS (2):

    1. “The aims of this study were twofold and integrated. The first was to explore whether Hans Asperger’s expression ‘autistic intelligence’ was a valid and possibly helpful concept to educators. The second was to discover whether this theorised cognitive style could be accommodated within an inclusive education framework”

    2. “There was some evidence that the term ‘autistic intelligence’ could perhaps be of use in describing in a more fruitful and holistic way than currently adopted, the complex experiences of students on the autism spectrum. There was limited evidence that the Local Processing Bias cognitive pattern of ‘autistic intelligence’, as theorised in the Literature Review, could be explanatory of some of the cognitive, social and sensory differences recounted by the students.”

    as said to McD: guess we will have to ask carly and others who have experienced…as McD say, “a specific day where the circumstances motivated her[them] to type…” see previous excerpts from talking typewriter examples (stanley seigler June 1st, 2011 17:22:14)…much more research needed re “autism intelligence.”

    [McD say] “And Carly had ABA/EIBI from a young age, so technically she didn’t just up and start typing one day”

    COMMENT: been years since my involvement in ABA/EIBI but seems they were more directed towards behaviors vice the three “Rs”…

    perhaps more to the “w/o formal education” opine are the examples from the talking typewriter article…and carly’s typing was orders of magnitude beyond ABA/EIBI (my opine)

    stanley seigler

  32. McD June 7, 2011 at 02:17 #

    I can’t comment about Carly’s ABA/EIBI, but my son’s certainly involves quite a lot of spelling and constructing words on the computer. He is about a year ahead of his class in reading, writing, spelling, comprehension, maths of all sorts, and other academic subjects due to his ABA. Sadly he still keeps trying to abscond from his actual school classes, when not monitored 1:1.

    We have been trying to find an old fashioned type writer for him to improve his finger strength and dexterity. No joy so far. Modern keyboards don’t require much effort. We did find an old computer tablet that required a ‘pen’ input in place of a mouse – after several weeks (surfing youtube) he improved his pencil grip sufficient to develop decent writing skills.

    ABA/EIBI is not synonymous with mass-trial DTT. In spite of what certain anti-ABA activists would have you believe.

  33. stanley seigler June 7, 2011 at 04:15 #

    [McD say] I can’t comment about Carly’s ABA/EIBI

    neither can i…just talking in generalities…but is your sons progress on par with carly’s…carly is close to a miracle…and

    the carlys in the world of autism is what needs more research…which has been ignored.

    i dont have the same opine of ABA as you…i lean toward ms dawsons opine (ie, their is promotional science)…but all that counts is what ABA(any program) does/notdo for the individual…eg, your son…it was not successful for my daughter.

    stanley seigler

  34. amandasmills September 1, 2014 at 12:28 #

    There are four of us with diagnosis at my house.

    The first of us to get diagnosed was my son P., who is autistic with an intellectual disability and severe language impairment, the next was a son diagnosed with aspergers and a severe case of generalized anxiety, then my son with pdd-nos somewhat language delayed but with more severe intellectual disability than his brother who can barely speak, and he gets frustrated and angry the most. Then there was myself. pdd-nos (moderate functioning score)
    I tell you this because in raising those three boys a total of 14 years now and having a label for my differences both challenges and strengths,

    its been my observation (all anecdotal, so take it for what its worth) that

    everyone on the spectrum is different, and so everyone is going to have a different array of challenges that are sometimes created by society, and sometimes more inline with the disease model, but are either way -disabling.

    I would love more than anything if P. could communicate better, A. would feel less anxiety and so then better express himself, and PJ could find learning easier. We’re working on all of those things. I do not know if the boys were offered “cure” what they would say
    but for myself I would never want to change who they are, and what are we, if not our brains, and how we think?

    I like my brain as messed up as it sometimes is. It’s ok to admit it disables me while at the same time saying, “I like how I think.”

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