‘Acceptance Therapy’ In Action

27 Apr

I was sent a newly published paper today and for one it was a total joy to read from start to finish.

Usually I have to wade through mercury, MMR, epidemics etc. Today there was none of that. The paper is entitled:

A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome

An intriguing title and one that I admit I first thought was going to be heavy on religion and low on science. I was wrong.

The results of this paper were:

Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world
views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents’ experiences indicate the importance of hope and of seeing possibilities that lie ahead.

How absolutely refreshing not have to wade through the _Strum und Drang_ of ‘the hell/abyss/nightmare’ of autism and how all its ‘victims’ are destined for a life of institutionalisation, abuse and neglect.

Over time, parents may experience changes in ways of seeing their child, themselves and the world. These new perspectives may encompass profound rewards, enrichments, and the appreciation of the positive contributions made by people with disabilities

and

A wide range of positive changes or transformational outcomes have been reported by parents of children with disabilities, including: the development of personal qualities such as patience, love, compassion and tolerance (Summers et al 1989; Behr & Murphy 1993; Scorgie & Sobsey 2000; Kausar et al. 2003); improved relationships with family members and others (Stainton & Besser 1998; Scorgie & Sobsey 2000; Kausar et al 2003); stronger spiritual or religious beliefs (Yatchmenoffet al. 1998; Scorgie & Sobsey 2000; Poston & Turnbull 2004); an ability to focus on the present (Featherstone 1980); and a greater appreciation of the small and simple things in life (Abbott & Meredith 1986; Kausaret al. 2003). Studies therefore indicate that, with time and experience, parents of children with disabilities may come to regain a sense of control over their circumstances and a sense of meaning in life by seeing the positive contributions of their children with respect to personal growth and learning whatis important.

There is so much truth to this. My marriage and relationships with my kids has grown stronger and stronger. We have learned how to work for and support each other in so many ways and we place precious value on the here and now. We don’t get the twice yearly holidays, constant cinema trips etc that a lot of my peers enjoy but what we do is spend lots and lots of time with each other. This would never have happened if our daughter wasn’t autistic.

Initial reactions to parenting a child with a disability

I remember when I first got the diagnosis, my preoccupation – to be perfectly honest with you – was about me. It wasn’t about my son. It was about what I was feeling. And I was feeling powerfully upset about this diagnosis because . . . it just completely turns your life upside down. I had plans. I wanted my children to be happy but I wanted them to be accomplished. . . . So both of us – my husband and I – had this vision of our children as being academically keen. . . . So to be confronted with the possibility that my son would not even have imagination, I just didn’t know what to do. I was devastated. and I couldn’t fix it.

Again, this is a very accurate reflection of how I felt at the time. One turns inward and searches for reasons, for blame and for a way to _fix_ things. I have to smile as I look back at those days now but they were pretty awful. Particularly for our daughter who we subjected to _our_ guilt.

Family Strengths

This is a quote from a service provider:

I find that the majority of families that I know who have kids with special needs are some of the strongest families that I’ve ever encountered. . . . I remember someone making a comment once about ‘You must see a lot of dysfunctional families.’ I said ‘It’s the exact opposite, they are some of the healthiest and strongest families that I’ve known.’

And I think that _can_ be true as well. Not always. I’m aware of a lot of families who have not managed to move past the ‘me’ stage and I hear about divorces and arguments and screaming matches and custody battles.

Neurodiversity, Acceptance and Cure

No, the word ‘neurodiversity’ is never used in this paper but it may as well be – its _exactly_ what some of these parents are talking about.

Our children have taught us the true worth of an individual. Our society tends to value persons based on performance, knowledge, education, the ability to earn income. And these children have taught us that there are so many more inherently important values, which have shaped us as a family.

One of the most powerful quotes from a parent was this one:

Another thing that makes me feel that I am so much smarter than I used to be is that I have given up trying to fix my son. . . . All I have to do is figure out . . . what he wants and what will make him happy, and try to put a structure around it. . . . He’s fine the way he is, and it was for me to figure that out and, gee, the poor guy while I was figuring that out.

Fine the way he is. Are there people out there who can _hear that_ ?

And it’s true that if you don’t change the way you think about this child, if you always think that you wanted to have a normal child and you are always comparing your child to a normal child, you’ll never really be accepting and you just don’t get anywhere.

It really is as if these researchers had interviewed me for this study (obviously they hadn’t – its Canadian) as these are thoughts and opinions that I share. It says to me that far from being an isolated phenomenon, the ideas that underpin what I think of as neurodiversity are much more pervasive and widespread than a lot of people imagine.

I’ll close by saying how much I enjoyed reading this paper. It moved me to tears and it made me grin from ear to ear. The authors conclude:

The findings may provide families with a sense of realistic hope for the future, and may validate their perspectives by showing that they are not alone in their experiences and challenges. It may be beneficial for families to know that family life changes, and that other parents report changes in ways of thinking about their child and their parenting role that provide a sense of control and meaning in life. Parents may find it useful to know that it is common to feel a lack of control, and disappointment and sadness due to lost dreams. Over time, many families gain new dreams, develop new understandings of their child and of the world, manage life effectively by adjusting their priorities, and report life-changing benefits for themselves, other family members, and members of the broader community.

Hasten the day :o)

66 Responses to “‘Acceptance Therapy’ In Action”

  1. K May 1, 2006 at 17:07 #

    Maybe this isn’t the right place to ask this, as it seems to be about acceptance, rather than prevention/cure, but how much is actually known about what causes it? From my position of ignorance, I assume that autistic people have some kind of differences in the brain. If that’s so, then is there more than one way to cause that difference? What are the most widely accepted theories?

    (I just read about the paraoxonase theory, and the differences between Italy and North America.)

  2. David N. Andrews BA-status, PgCertSpEd (pending) May 1, 2006 at 19:31 #

    JBJr at it again….

    He’s obviously in love with me but can’t admit it:

    *quote*
    Fore Sam said…
    Mouse;
    I think any sane person who encountered Andrews would consider him quite “messed up”. That’s why he needs a guardian to help him understand that he was poisoned by mercury so he can help himself and his kid. I’ll volunteer to be his guardian, chelate him, and then he’ll be able to think straight and help his kid.
    *endquote*

    I wasn’t poisoned by fucking anything! The man’s an idiot. I would rather kill myself than have JBJr as a “guardian”! Who’d let a prize imbecile like him be a guardian to anyone if they read the shite he peddles!

    If I weren’t so tired, I’d laugh.

  3. David N. Andrews BA-status, PgCertSpEd (pending) May 1, 2006 at 20:15 #

    Any Mouse called me about this post:

    *quote*
    Anonymous said…
    John,

    As I understand it YOU have never met David Andrews in person. What you know of him is his opinions career education and the fact he is openly autistic. His career opinions and education are positive attributes. The autism is neither positive nor negative. It is only a statement of fact. The fact that he states this fact so openly when there are people like you who would use it against him despite all the other evidence of his achievements speaks volumes for his integrity and strength of character.

    Any Mouse
    *endquote*

    Any Mouse was at my Vappu gig today, where I sang mostly my own songs or traditional British folk songs… only one or two that anybody actually knew by mainstream artistes.
    Any Mouse, unlike JBJr, is not threatened by my educational achievements (and so, he does not decry them); nor is he threatened by my being autistic (and so, nor does he decry me); he is not even threatened by my musical ability (and so, far from decrying it, he openly states that my musical skills have been a major part of his own coming to develop his competence as a blues-harp player – although personally I feel that he has been quietly ‘waiting’ for the right environment in which his skills could come out as clear artistic expression… the mix of skills and environment in which to practise and use those skills really needs to be right).

    I shall refrain from saying how many of JBJr Any Mouse is worth: I should not wish to offend Any Mouse by making such a comparison. There are not enough JBJrs in the world, in any case, but it’d be like comparing apples and oranges… totally nonsensical.

    I shall just quietly say: Thank you, Mouse.

    David

  4. Jonathan Semetko May 2, 2006 at 01:22 #

    Hi K,

    “Maybe this isn’t the right place to ask this, as it seems to be about acceptance, rather than prevention/cure, but how much is actually known about what causes it?”
    From my position of ignorance, I assume that autistic people have some kind of differences in the brain. If that’s so, then is there more than one way to cause that difference? What are the most widely accepted theories?”

    No, it is a good question, even though the issue itself is grenade like.

    There are many theories. Some have far more merit than most. None are decisively proven.

    The position I think is true, is (simplifying a good deal) that autism is genetic. I also take the position that autism is natural part of human variation.

    There are differences between the brains of autistic and typically developing persons that are broad ranging. Also, intelligence and perception have been shown to be fundementally different between these two groups, with each group having strengths and weaknesses compared to the other group.

    Seen this way, (refering to you first question and to the multi-cause question) perhaps asking what causes autism is just like asking what causes one to be typically developing.

    Many things probably do not cause autism (in terms of vaccines, or mothers who hate their children), but many biological processes are part of what makes an autistic person an autistic person (just like what makes a typically person a typically developing person).

    Hope that makes sense. Also, if any autistic person here corrects what I have said, go with that instead.

  5. David N. Andrews BA-status, PgCertSpEd (pending) May 2, 2006 at 09:15 #

    He’s always got to have the last word, hasn’t he? How childish….

    *quote*
    Fore Sam said…
    Andrews;
    I see we’re back to conversing on different blogs. I understand nobody wants to have a guardian. As you read about the progress my son is making, I would think you’d at least be curious to see what it would be like to live life without autism. Your musical art would probably improve quite a bit if you didn’t have mercury screwing up your brain. I used to be a musician but golf and handicapping horses were much more of an intellectual challenge so I gave up the music. I think you should consider letting me cure you. Maybe your sanity will improve enough so I can teach you the art of hitting a golf ball. It’s nice and peaceful on golf courses, a good place for people with mental disabilities and you can sing while you’re walking between shots.
    *endquote*

    I’m not actually conversing here; merely recording his inane whitterings for posterity.

    JBJr is a seriously dangerous person, it seems. Incidentally, I have been on a golf course… it was one of the most boring experiences of my life. I have seen golf on television. The camera follows what the person behind it thinks is the arc of the ball, but in fact it is quite impossible to see the ball… too small and pale against the vast pale expanse of sky against which they shoot it. Again, boring.

    Maybe if JBJr got himself a decent hobby, like – I dunno – maybe pottery or making model aeroplanes, or even if he took up music again… maybe he’d get the excitement out of life that he needs and then he would have no further need to come here on the internet to annoy people out in the real world.

    His response to Mr Mouse is quite telling:

    *quote*
    Fore Sam said…
    Mouse;
    I never met Charlie Manson but I know he’s a wack job.
    I don’t have anything against Andrews. He’s a pathetic figure. I just want to see him get the help he needs so he can save his kid from suffering with mercury poisoning. You people listen to each other too much and you need to hear the opinions of sane, normal people once in a while so you can help yourselves escape the abysmal nightmare of autism which is now curable.

    2:08 PM
    *endquote*
    Is he comparing *me* to Charles Manson? That’s the guy who *fist-fights* his own very young autistic child to teach him “not to be a pussy)… who will happily *hit* his autistic child as a means of punishing the lad for something he did wrong… and who is determined that his child *will be institutionalised* if he fails to ‘become normal’ after all this *unproven and ineffective treatment* he is pouring onto his child. And he is comparing *me* the Charles Manson?

    I have never killed anyone in my life. I have never hit my child. I do not fist-fight my child. And I have never even considered doing anything that would endanger my child’s life in any way. My child is far to precious to me for anything so ridiculous and crass.

    Maybe JBJr does have something against me, and it’s because I (and many others of us here) show the lie behind all this preposterous rubbish he spouts which was spouted at him… but he isn’t gentleman enough to accept when he’s beaten. I’m too successful for him. He failed as a psych major (obvious from everything he posts), he’s failing as a father (by the standards of the vast majority of people I know… in Finland, we don’t hit kids!), and he’s failed as a skilled debater (we can see how he behaves to those who disagree with him), and – as a *man* – he failed in that one before he even got to puberty: just look at how he thinks that women should be treated for disagreeing with him!

    No wonder he has something against autistics in general and against me in particular.

    I blame his parents, myself.

  6. K May 2, 2006 at 09:52 #

    Thank you Jonathan Semetko. Just this morning I read this in today’s paper:-

    http://women.timesonline.co.uk/article/0,,27869-2160119,00.html

    which is saying that some cases may be environmentally caused, or a mix between genes and environment. But not other cases.

    I’m interested in this, because I’ve just been reading about Gulf War syndrome, how the men who got brain damage from chemical exposure didn’t have the same natural ability to cope with chemicals as the men who did not get ill. e.g. lower natural levels of paraoxonase.

    So the men who got gulf war brain damage after chemical exposure had lower natural levels of paraoxonase.
    http://www.newscientist.com/article.ns?id=dn3546

    And north Americans who get autism also have lower levels of paraoxonase. http://www.newscientist.com/article/mg18825275.100.html

    So if you are one of the people who has less paraoxonase, I guess you’re more likely to get autism, or gulf war brain damage etc, even though it doesn’t account for all cases of autism.

  7. bonni May 2, 2006 at 13:36 #

    Of course, Kevin couldn’t defend his position

    That would be the position that genetically “inferior” people should NOT be eugenically destroyed in the name of a purer race?

    Yeah. Pretty hard to defend a position like that…

  8. bonni May 2, 2006 at 13:41 #

    Oh, and Kev, it’s good to see your site hasn’t been haxored yet. I know you really phear his madd skillz.

  9. Jonathan Semetko May 2, 2006 at 14:21 #

    Hi K,

    We have to be careful not to use cum hoc, ergo propter hoc (this with that, therefore, this because of that) reasoning. The fact that paraonase is present in Italian autistics, but not in American autistics is a good sign that paraonase is not related to autism in a significant way. We find the same rate of autism, all over the world. It would be counter-intuitive to have paraonase to be causally related autism in the US and yet not so in other nations, which just all happen to have the same prevalence as the US.

    There are so many theories of what causes autism (or what helps cause it), that it is really, really hard to discern the crap from meaningful lines of inquiry.

    Best of luck in your search.

  10. Kev May 2, 2006 at 14:44 #

    _”Maybe this isn’t the right place to ask this, as it seems to be about acceptance, rather than prevention/cure, but how much is actually known about what causes it?”_

    Hi K, welcome along :o)

    Asking questions is always good.

    _”From my position of ignorance, I assume that autistic people have some kind of differences in the brain.”_

    Anatomical and chemical, yup.

    _”If that’s so, then is there more than one way to cause that difference?”_

    No doubt.

    _”What are the most widely accepted theories?”_

    Now that’s the can of worms ;o)

    Some people think its mostly genetic. Some think its entirely environmental – most people take the sane position that its probably a bit of both.

    As for direct cause, some people think vaccines, some think other chemicals, some think fetal-alcohol – some people even think space aliens or plastic cups!

    The bottom line is that no one knows. Its why Jonathon has cautioned caution if you’ll forgive the awful pun. Its the opinion of a lot of us here that we the question of causation is essentially a scientific one and therefore we must use the rigours of the scientific method to support or refute a theory based on its scientific (or lack therof) merits.

    _”I just read about the paraoxonase theory, and the differences between Italy and North America.”_

    I don’t know that one – can you post a few links?

  11. Ruth May 2, 2006 at 15:29 #

    K-

    My experience is that autism is genetics with some pre-natal environmental exposure thrown in. I now recognize my autistic traits, as well as those of some family members. Before the revised diagnostic criteria, we would not have been labeled as autistic. We were the smart, weird kids everyone beat up, now it’s called Asperger’s. One daughter is a repeat of my childhood-she functions well enogh to be in a gifted program, but walks on her toes. Another daughter receives special ed. Is she more affected because her dad has some autistic features also, and the combination caused her different brain (fewer verbal skills, math and spatal abilities in the gifted range)? Or was it chemicals I was exposed to (I’m a chemist), or that my autoimmune disorder was active during her pre-natal months? These are rational questions to ask. What I can be sure of, is the differences in our brains are established in the first trimester. Shots of thiomerosal at 6 months will not alter the amount of gray and white matter in the brain, or change head size.

  12. K May 2, 2006 at 15:49 #

    Jonathan Semetko, Kev –

    This article talks about why paraoxanase may be a factor in America but not in Italy.
    http://www.newscientist.com/article/mg18825275.100.html

    If you google for paraoxanase autism you should find plenty about that study.

    Then try googling for paraoxonase gulf war.

    Low paraoxonase seems to mean increased susceptibility to brain damage from chemicals.

    Ruth – you wrote “What I can be sure of, is the differences in our brains are established in the first trimester.”

    OK, this is probably a very stupid question, but does first trimester mean first 3 months of pregnancy?

  13. David N. Andrews BA-status, PgCertSpEd (pending) May 2, 2006 at 16:19 #

    JBJr really *is* being childish.

    *quote*
    Fore Sam said…
    David;
    I didn’t compare you to Manson because he was a murderer, just because he was loopy. I find golf boring on TV too, playing it is a different story. Maybe if your old man taught you how to fight, you wouldn’t be such a twerp. Hiding your comments on Kevin’s blog where you know I can’t comment just shows you to be a deranged wimp. Any man who wasn’t a wimp would just tell me to go to hell here. If you let me cure you, you might be able to handle that. BTW, I never pursued psychology as a profession as I found better ways to spend my time than sitting in an office listening to wackos.
    *unquote*

    What a wasted person that man is.

  14. David N. Andrews BA-status, PgCertSpEd (pending) May 2, 2006 at 19:34 #

    Heh…. now I know what winds JBJr up 😀

    *quote*
    Fore Sam said…
    David;
    If you weren’t so childish yourself, you would answer me here instead of hiding on Kevin’s blog. Do you and Kevin hide behind your wives skirts when confronted in person?
    *endquote*

    In case anyone doesn’t remember, JBJr was the one who very nastily and viciously had a go at me about the fact that I no longer am married. He has a very poor memory for facts, and an excellent memory for extravagant fictions, doesn’t he?

    Even when I was married, I never hid behind her skirts. JBJr, however, has to hide behind his very overdone attempt at manliness (“if you weren’t so childish yourself…” and so on…) .

    If comment moderation were not in place, I’d answer him on his blog, and have done so. However, I don’t think that he can be trusted to leave comments alone… so I choose not to risk him adulterating my responses… I have seen his blog, and I know – as we all do – that he has this seriously unchecked impulse to adulterate (mess about with) what I say. I refuse to take that risk.

    Pity he is so selective in his thinking that he cannot remember what is on his own blog!

    Like I said… a very sadly wasted person.

  15. Jonathan Semetko May 3, 2006 at 04:59 #

    Hi K,

    Kind of a cool article. Paraonase was new to me. Thanks for passing it on.

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