The great autism political divide

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I've always found it sad that we have such a huge divide between people with autism, and families of people with autism, and researchers into autism.

Some of that is inevitable. But most of it is just ignorance about what the other side thinks.

To that end, I offer two links of other, newer sites that are in different places on the political spectrum than this one is (and yes, I've already posted a link to Wrong Planet as a great example of the neurodiversity movement):

For the cure movement, I offer Autism Blog , a place where many parents go to rant out their frustration and debate possible "cures". They could use a few more people who actually have autism there to give them some hope.

For the newly-diagnosed-as-an-adult group, and as an alternative to the highly destructive politics of FAAAS, may I present Discover Aspergers, a very new PHP BBS site specifically for the newly diagnosed adult and his/her spouse. This one, I'd consider almost centerist when it comes to the discussion; you'll find stuff from both Tony Attwood and Temple Gradin here.

I would not agree that all researchers are doomed to misunderstand and come into conflict with the autistic community.

I can think of one young lady with AS/autism who I know here is working as a PhD student on matters to do with brains. I do not know the exact details of her PhD project but I think it is on something which is very relevent to AS/autism.

I know that this young lady knows some other researchers who work on brain biology / biochemistry who have AS.

While I can not be a fly on the lab wall and watch them 24 hours a day, I think that that these researchers are very unlikely to come into conflict with the AS community.

The reasons why I are not able to be a fly on a wall are as follows

1. It would be creepy and wrong for me to spy on them as a fly on the wall.
2. I am not physcially able to hang onto the wall with my arms all day, given time I will get worn out and then fall off the wall.

_________________
Health is a state of physical, mental and social wellbeing and not merely the absence of disease or infirmity I am not a jigsaw, I am a free man !

Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.

I have yet to notice this "huge divide", though I manage not to notice a great many things that are apparent to NTs and even some Aspies.

I'll check out DiscoverAspergers.com forum to see what's there, but since I'm neither young nor a parent, I'll skip the other one.

Once I get my insect drones operational, I'll be happy to have them serve as flies on walls for any useful purpose.

Seebert, I for one am grateful for your suggestions about forums or sites that are more "centerist" or balanced. I will take some time to explore these places.

A lot of what I do is in relation to situations where AS has only just been identified or diagnosed. My role has been in partner support, and most of what I do is to explain AS as best I can and try to help them understand how AS has been playing out in the difficulties that have arisen between them and their partners. Both partners need an interpreter until they have learned and understood enough to be able to recognise what's going on and do the interpreting for themselves. I always refer people on to AS experienced psychologists who can diagnose and mentor.

On the whole, since about 2002 I have avoided forums, partner or otherwise, because I did not find them to be particularly constructive in helping people move on and through their stages of understanding, grief and growth. It is too easy to go round and round in circles and remain stuck when people are constantly commiserating and reminding each other of how difficult it is. This was a major contributor to my motivations to start an on-the-ground, local face-to-face support group where partners can talk, receive the validation they need, but also receive the education and support they need, and go home with hope and practical ideas to try. We've also worked hard on building up a network of local professionals and support. It has always been my intention to promote understanding, because my belief has been that understanding makes all the difference. Then we need professionals to guide us in the practical steps to take us forward from there. And some community supports and services would help too!

Partner support really needs the input of people with AS who have embraced their AS realistically and can work together with their partners and the non-AS community to find simple practical solutions for avoiding or easing the pitfalls that naturally occur between two people of different neurologies. Two-way bridges. Understanding and assistance from both sides. I am still quite concerned that many of the AS partners of those in our group have not yet been willing to commence their own journey of self-discovery, so the non-AS partner has to work alone on understanding AS, changing expectations and caring for himself or herself within the situation. If anyone has any suggestions on how to encourage an AS person to explore the possibility of AS for themselves, I would be very grateful to hear from you.

There have been many contributors to my journey of understanding, and I am extremely grateful for four psychologists here in Sydney who have been particularly interested in adult AS and have had very supportive and educational roles in my life and also ASPIA's work. There are also some websites and books I have drawn a great deal of learning from over many years.

But the primary influence in my attitude since 2000 or 2001 has been Tony Attwood, particularly via his workshops. I have heard him present 6 or 8 times at least and I've also heard Temple Grandin in person too and was totally fascinated. She is amazing. While other voices and places have taken on more severe tones, Tony has stood out as a gracious beacon of acceptance and understanding and his role in the development of my attitude has been as an interpreter to help me understand AS and then pass on that understanding to others. I have taken many cues from him. Occasionally I email Tony to ask for some input, and he is consistently balanced and supportive in his responses. He holds great affection for people with AS, and I have never detected even a whisper of guile in his attitudes.

I am the sort of person who is drawn to want to support those who are disadvantaged, so as soon as I realised that AS is neurological and not an attitude or choice, my desire has been to promote understanding in as merciful and constructive manner as possible. I have deep empathy for people with AS, as well as having deep sympathy for the non-AS partners who have not known about AS and have not known how to respond to their AS partners.

It is difficult with couples who have been struggling long-term without any knowledge of AS. There are years of stuff that have to be unpacked. Neither have understood each other or what has been going wrong between them, and no community workers or health professionals have been able to help them because they've been ignorant themselves. It's very sad. I often wonder how many marriages have been lost because of ignorance about AS, and they still have no idea so can never find closure, just lots of grief and no explanation. This can leave people open to deep bitterness as well, which causes people to want to harm others or be retaliatory.

So, thank you for some ideas about constructive places to look at on the internet. Any more you can suggest will be gratefully received as well. I do feel that recent matters have brought some of us to a kind of crossroad, and that things can be different and better from now on if enough of us from both the AS and the NT communities are sensitive and desirous of better and mutual understanding, participation and support.

Carol Grigg, ASPIA

Carol: Near as I can tell, the *ONLY* real beef that the AS neurodiversity movement has with Tony Attwood is his involvement on the board of FAAAS and their attempt to use the "Cassandra Syndrome" in political ways, particularily in divorce courts to assign fault to the AS spouse and deny them parental rights.

The rest of his research, and even his attempt to answer this charge, have been wonderful. Yet FAAAS still seeks these intensely damaging changes to family law; and it is somewhat worrisome to think that one day my wife may be allowed to divorce me just because my diagnosis came two years after our marriage, and I might be denied the right to see my own child merely because of this disorder.

There's a Zen ideal in Buddhism that the death of expectation is the beginning of acceptance. I look at my unusually strong marriage, and I see that playing over and over again. We're able to accept the faults in each other (my wife was a special needs child also- dyslexia; my son is also special needs- Cerebral Palsy) because we don't give ourselves over to expectation of that which the other cannot provide. I don't see such a marriage as flawed at all; in fact, I think we're the stronger for it.

Of course, it also helps that I'm very philosophical (it's one of my obsessions) and that we're Roman Catholic (and thus, for us, intimacy comes from everyday living and the primary purpose of sex in our marriage is having children).

Regarding FAAAS and their use of "research" in divorce cases, I know that a UK divorce case is held in camera but is it possible to find out how many times this evidence has been used by an "expert witness".

I would reason that even an expert witness can be subject to later criminal court action (perjury) if they can be shown to have lied or behaved in a reckless manner. I would dearly like to see the research methodology of the people responsible for “Cassandra Syndrome” to be paraded in public. I think is it high time that these controversial ideas are discussed openly be serious academics and experts in the field. I suspect that the “Cassandra Syndrome” will be debunked if the details and the evidence for it are laid out in public.

_________________
Health is a state of physical, mental and social wellbeing and not merely the absence of disease or infirmity I am not a jigsaw, I am a free man !

Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.

Woodpecker- I suspect personally that the Cassandra Syndrome is misnamed, but real. I'd call it the Cassandra Effect instead; a result of many years of living with an undiagnosed Asperger's patient. But just because it's real, doesn't mean it should be used as a cause for divorce or denial of parental rights; quite the opposite. I say it needs treatment instead; that just as the newly diagnosed AS spouse has to now deal with that diagnosis and start learning coping skills, so does the CE spouse need to learn some coping skills and a way to stay together.

I hold the view that the "Cassandra Effect" or "Cassandra Syndrome" (call it what you will) was never the product of well thought out research. I think that it is flawed, or can be reduced down to an existing condition.

I feel that a good doctor or lawyer will rather than trying to invent new illnesses or argue new lines of reasoning will see if an existing illness or line of reasoning fits each new case which they encounter. Maybe if no existing illness or line of reasoning works then you can try a new one, but it is better to not rush off to try to make a name for yourself inventing things which when examined in detail are found to be either wrong or something else dressed up as something new.

_________________
Health is a state of physical, mental and social wellbeing and not merely the absence of disease or infirmity I am not a jigsaw, I am a free man !

Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.

I am very interested to continue participating in this topic, but I will be away from my home computer for a few days and may not have adequate internet access while I'm away.

Carol

I’d like to pick up the thread of the great autistic divide again.

My apologies for disappearing for so long. I actually travelled from Sydney to Brisbane last weekend to attend the world-first seminar on Asperger’s Syndrome in Females. I found the whole experience extremely interesting and inspiring, and it was also very exciting to make some wonderful new friends and contacts, and put some faces to names I already knew.

Tony Attwood and Michelle Garnett, also a psychologist in Brisbane, co-presented the main content. Millie (of WP) and three other wonderful AS women gave short presentations. Millie gave a great presentation on special interests becoming a career path. Millie is a delightful, fun and inspiring woman, and her artwork is beautiful. I feel very privileged to have been able to meet her, and even enjoy a private chat later in a café. Thank you Millie.

Like you said Seebert, the great autistic divide is mainly caused by ignorance. I agree. I have held the belief for a long time that the greatest problem is the lack of awareness, and it’s not just this present generation, it’s the generations that have gone before us as well. Awareness has come to us, and this is a privilege. But it’s also a huge challenge, because with “light” comes responsibility and we have a whole world that needs to learn and understand, including ourselves.

Now, there’s a few things I want to say, but if I say anything that is really off-beam, please point it out to me, but gently. I am very open, and I dearly want to learn and get my head around the important issues.

Neurodiversity, in my understanding, is a fact and already exists. This describes the world. What’s missing or lagging behind is understanding. Without understanding we have intolerance. Intolerance divides. Divides society and divides homes.

I actually believe that discovering and understanding AS helps all of us finally understand the rest of the world, and ourselves.

I had an additional privilege of hearing Tony Attwood again yesterday because he was presenting at a workshop in my local community. The target audience was
parents and educators of children and teens, but as usual, so many of his comments just encapsulated so much insight.

A comment he made just keeps resounding through my thinking, and I believe it is astonishingly profound.

He said “Without understanding of Asperger’s Syndrome, people make a moral judgment”.

If we don’t understand difference, then we make moral judgments about people’s behaviour. In our homes, our neighbourhoods, churches, schools, places of employment, everywhere in society. Then we condemn, attack, ridicule, reject and exclude. We’re an awful lot really.

To my thinking, we all need to work on facilitating understanding of difference.

I recognise the importance of the concerns expressed in the Petition about partner support groups contributing to negative stereotypes, but I believe the NT and AS communities both need to be careful to present AS to the world in as constructive a manner as possible, without hostility or the reinforcement of negative stereotypes, so that we can break down this great divide.

Whether NT or AS, each of us has a responsibility to understand our own selves, and to be being the best “NT” or “AS” person we can be. (I think Millie inspired this thought about being determined to be the best AS woman she can be.)

What I believe we need is: understanding of self and each other; securing of constructive support, not just for AS people but for their families as well; working together to find solutions that work.

Family members, AS & NT, who understand AS, who are motivated and who are being supported can actually be allies, not enemies. The same goes for our communities.

Carol Grigg, ASPIA

That's fine as far as the NT/Cure side goes; but on the neurodiversity side I think we also need to accept that the Cassandra Effect *is real*. It might not be as described, it might not be anything close to as bad as FAAAS makes it out to be, but everybody's behavior has consequences in the lives of people around them (which is the central theory of the Cassandra Effect) and sometimes those consequences *are* negative.

To that end, I work very hard in my marriage to make sure that my wife and son know I love them, not for my sake, which could care less due to the AS, but for theirs.

Seebert, your attitude towards your partner and children is a perfect example of how an AS partner can help overcome a huge portion of the "Cassandra" problem within a marriage and family.

The non-AS partners in our group (women and men) would cry if they read your comment, because this is what they long for - AS partners who have accepted their own AS, learned about how their AS is impacting on their own life and also the lives of their partners and family members, and then implementing practical ideas and solutions to help overcome the negative impact - for the sake of the partner and children, because they love them.

Actually, life can then improve for the AS partner/father/mother too because the non-AS partner and family members will back off emotionally and ease up on the unrealistic demands and expectations.

Would it be possible to have you write a testimonial for our group about how you came to recognise the impact your behaviours were having on your family and what you have been doing to change this and ensure they know you love them?

The original concept of "Cassandra" was useful because it described the experience of a person living with a phenomenon at home that wasn't readily apparent to others outside of the home, and no words could be found to adequately describe the situation, particularly because of societal and professional ignorance. When you know you're telling the truth but no-one will listen or believe you it's very damaging, particularly when you don't understand what's going on at home and you recognise that somehow you're making it worse but you have no idea what to change or how to respond and you know you need help, but you can't find any.

Testimonies indicate that in the majority of cases, it's the non-AS partner who is seeking help for the situation, not to "out" the person with AS, but because they're not coping and they want to find a way to overcome the difficulties and hopefully save and re-build the marriage or family situation.

The Cassandra movement that has grown and marched is mostly driven by the problem of ignorance and late diagnosis that still exists. Ignorance in the professional community about AS and the impact in families, ignorance in people with AS who haven't yet acknowledged their AS or begun to address or manage their difficulties and ignorance in society because this leaves families without understanding or support.

I have been very wary of taking "Cassandra" too far because my personal definition of Cassandra has been that she is who we were before we were heard and believed. With the advent of partner support, Cassandra has been heard and believed, so therefore Cassandra can be at peace.

However, the problem of ignorance still exists, so many non-AS partners are still not getting the support they need - either from their own AS partners, or from the professional community or from society. Partners who are not receiving the acknowledgement and support they need will have great difficulty recovering emotionally and will not thrive well. "Cassandra" and "CADD" have been used to describe this phenomenon. And sadly this has led to the perception of blame.

Many non-AS partners are very discouraged and some are quite bitter because sadly, the AS partner has been blaming them for all the problems that exist between them over many years, sometimes decades. In fact, many non-AS partners display a lot of self-blame too when they first come for help. When AS is finally identified within the situation, non-AS partners can tend to then point the finger back at the AS partner and feel justified in blaming them. Blame is very destructive and does nothing to help solve the problem.

Both partners need to have mercy on each other, gain understanding, stop blaming, take personal responsibility for their own stuff, and then find solutions together, preferably with professional guidance if it's available.

My experience has been that once a non-AS partner recognises that AS is neurological and that their AS partner's hurtful attitudes and behaviours are not driven by an intention to harm, they begin to find peace within their own being and mercy in their hearts for their partners. AS partners do need to be encouraged however to overcome their own ignorance, step up to the mark and participate in solutions. Otherwise the "Cassandra" type of effect in the home will grow and continue.

Carol Grigg

I'm pretty busy over the next couple of weeks; and I feel for this, perhaps my wife and I need to write this together. (I'll do the typing so that the grammar is correct and understandible- her problem is dyslexia on word meanings).

It seems to me this topic can be divided into three more general areas:
1. For the AS partner, duties taken on by the vows of marriage and an if-then-else tree of how to implement them (one of the best pieces of advice I ever got came in this form from the New Red Green Show on CBC- go out today, buy a present for your spouse, wrap it, and hide it in the garage. One day she'll give you that look and you'll know you have forgotten something- that's the day to give her the present. It WILL happen, so prepare for it now).

2. For the NT partner- ways you can decorate your house to make it truly into the sanctuary from the world the AS partner craves. Believe it or not- two TV sets in different rooms, thick curtains and dimable remote-controlled lights have done more for our marriage than anything else.

3. For the child of AS/NT parents- how to get what you need the best.

In fact, I might make this a family affair.