Dealing with family

HI,

 I would like to thank you for giving me this opportunity to introduce myself.

My name is Berenice Carissa, I had completed my graduation from Oxford University. I had 5 years experience in technology. My life ambition is to become a successful woman in my organization. My hobbies are creating new ideas, new crafts from waste papers and water bottles.

That's it about me

Thank you.

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Wow. Do you think you can introduce the concept to this person? That's alarming isn't it?

People wth ASD are so hard on themselves. I know so many people WITHOUT ASD who totally lack empathy and those who HAVE ASD who are incredibly astute...it frustrates me! It must ruin their confidence being told that a key symptom is a lack of empathy. When my son was tested last month his psychologist said he had incredible empathy and then she went on to say that he had ASD. I felt confused but now I understand. He definitely IS ASD and it was the first time that I had proof that he was with the knowledge that he is also incredibly thoughtful. I told an acupuncturist I see for migraines about my son's ASD diagnosis and he said that if he had empathy he wasn't ASD. I felt angry but then I realized that some people just don't know and I have to let it go...the anger disappeared. So many people WILL understand and if it ever hits this man's sphere he will too. It's a lack of exposure...he works miracles on my migraines but he is not a specialist of ASD. I accepted that and that his skills weren't in the ASD field. Each to their own thank goodness but I hope your colleague will look into Aspergers evenso....!

Mona79 said:

I think it's a hard thing to accept because it's not seen as simply another way of being which it should be! Last night I was saying to my husband that we may all be human in this world but what does that mean?! We all think SO differently. I have OCD and I'm not the sum of THAT but say "autistic" and people jump to conclusions just as they do with OCD. I don't wash my hands all the time. We are NOT all alike! My son is more compassionate and sensitive than most people I know but he has ASD. They say you know one person with an ASD and you only know ONE. That's true too. Stereotypes due to film and literature can be very damaging. I do LOVE reading and listening to Tony Attwood however. He is full of compassion. 

My son is one of the most interesting and gentle people I know. He is quirky and full of joy as well as of frustration but I understand him perhaps due to my battle with OCD. I think some people just feel things very acutely. That could be seen as a handicap but also on good days a gift.

I agree.  Mental health is another area where people hear one thing and think another.  A lot of this is to do with the way the subjects are treated in the popular media.

People with Asperger's are stereotyped as 'lacking empathy'.  I was told by people I know that I couldn't have Asperger's because I work in care.  Yes... I do.  But there's a difference between being able to care for someone and being able to put yourself in their shoes.  I do have trouble with empathising.  That doesn't stop me from being a human being, though.  On the other hand, quite a few of the care workers I've worked with over the years often don't seem to really 'care' very much.  I think it's in large part about being able to identify with minorities and the vulnerable.

Today at work, a few of us were talking about the film 'The Imitation Game', based on the life and work of Alan Turing.  A few people spoke about his homosexuality.  I mentioned that he was an Aspie, too. 

'What's an Aspie?' asked one of my colleagues.

I replied 'It's shorthand for someone with Asperger's Syndrome'.

'Asperger's Syndrome?  What's that?'

You have to bear in mind that we're all trained care workers for people with autism and special needs, and a couple of our clients have Asperger's.  I couldn't believe that someone there hadn't even heard of it, or understood it.

It shouldn't really surprise me though , given the experiences I've already mentioned.

I think it's a hard thing to accept because it's not seen as simply another way of being which it should be! Last night I was saying to my husband that we may all be human in this world but what does that mean?! We all think SO differently. I have OCD and I'm not the sum of THAT but say "autistic" and people jump to conclusions just as they do with OCD. I don't wash my hands all the time. We are NOT all alike! My son is more compassionate and sensitive than most people I know but he has ASD. They say you know one person with an ASD and you only know ONE. That's true too. Stereotypes due to film and literature can be very damaging. I do LOVE reading and listening to Tony Attwood however. He is full of compassion. 

My son is one of the most interesting and gentle people I know. He is quirky and full of joy as well as of frustration but I understand him perhaps due to my battle with OCD. I think some people just feel things very acutely. That could be seen as a handicap but also on good days a gift.

Mona79 said:

Your aquaintance's husband may be in denial about the possible diagnosis. Only later do you realize that your child is not transforming, that she or he is exactly the same as before and that things can only improve as a result of a diagnosis. Until you realize that it doesn't take away your child it seems a little daunting.  My husband denied the fact that our son had a problem right until the day of the diagnosis then he changed radically his way of dealing with problems, discipline etc overnight. He is so adaptable and our son's behaviour is already improving now we have the key. Perhaps this person will do the same and if not in time...people surprise you in their reactions. I was far more shocked than my husband was and I've known my child functions differently from birth! You never know how you will react. I was just frightened it'd take away what I found to be beautiful and turn it into a symptom then over time I realized that those things still ARE just HIM and beautiful symptom or not!

Yes, that book is extremely worthwhile.  From what you say, I think you'll find that second chapter very interesting.  It was, actually, the Susan Senator book that played a big part in changing that couples' approach to their son.  The 'cures' - medication regimes, chelation therapy, exclusion diets, mineral supplements, etc - were costing them thousands... and simply making their son more and more unhappy.  A behavioural therapist who was working with him at the time, though, was achieving excellent results.  It clearly must be a very hard thing for many parents to accept - especially when many still talk about autism as a disability - instead of a 'different ability'.  I've always struggled with many things that most people take for granted: social relations, communication, etc.  But there are other things I'm good at - including some things I'm probably better at than most.  It's swings and roundabouts, as they say!

I love criterion at the clinic and Lazar sounds incredible.

Thank you so much for your time and for your advice for books. I particularly like the sound of the second. I will order it. I was fascinated by the excerpts you included. Thank you.

Your aquaintance's husband may be in denial about the possible diagnosis. Only later do you realize that your child is not transforming, that she or he is exactly the same as before and that things can only improve as a result of a diagnosis. Until you realize that it doesn't take away your child it seems a little daunting.  My husband denied the fact that our son had a problem right until the day of the diagnosis then he changed radically his way of dealing with problems, discipline etc overnight. He is so adaptable and our son's behaviour is already improving now we have the key. Perhaps this person will do the same and if not in time...people surprise you in their reactions. I was far more shocked than my husband was and I've known my child functions differently from birth! You never know how you will react. I was just frightened it'd take away what I found to be beautiful and turn it into a symptom then over time I realized that those things still ARE just HIM and beautiful symptom or not!

Perhaps your brother DID read your information...I hope you feel relieved in yourself. I realize (late!) that change has to come alone to people. We can do nothing about it from the outside but protect ourselves. Good luck and thank you for your help.

I have an acquaintance whose teenage daughter is awaiting diagnosis.  She has lots of problems at school - making and losing friends very quickly, class disruption, etc.  Then, at home, there are frequent 'meltdowns' as she calls them.  She is much more understanding than her partner, who thinks the behaviour is 'wrong' and needs to be punished in the same way that parents might punish an ordinary child: grounding, denial of treats, etc.

Compassion is everything, as you say - and that comes with understanding (or, at least, trying to).  I was diagnosed late in life - last year, aged 56.  This is after a lifetime of increasing alienation from my family because of my behaviour.  Even now, with the diagnosis, some of them still don't 'get' it.  They can't persuade themselves to suspend judgment and look at things in the way they might with someone with, say, Parkinson's or Alzheimer's. In the analogy I like to use, I'm a cat in a roomful of dogs.  I'm trying hard to behave like a dog to be like them, even though I'm a cat.  They don't see me in that way, though.  They see me as a failed dog.  I sent my brother my full diagnosis to read.  He's never mentioned it once.

A book that you might find interesting (maybe some members of your family might learn something from it) is Susan Senator's 'Making Peace with Autism'.  There are some cheap copies available on Amazon (40p upwards). 

www.amazon.co.uk/.../ref=sr_1_1

Also, Steve Silberman's 'Neurotribes: The Legacy of Autism and How To Think Smarter About People Who Think Differently' is excellent. 

www.amazon.co.uk/.../ref=pd_sim_14_1

Chapter 2, 'The Boy Who Loves Green Straws', tells the story of an American couple who tried to 'cure' their son's autism before coming to realise that they were ignoring who he really was, and his uniqueness.  And Chapter 3, 'What Sister Viktorine Knew', looks at the work of early 'humane' practitioners in the field, including Hans Asperger.  He began his work at the Children's Clinic in Vienna, which was founded in 1911 by Erwin Lazar.  Instead of seeing the children in his care as flawed, broken, sick or disabled, Lazar believed they were suffering from neglect by a culture that had failed to provide them with teaching methods suited to their individual styles of learning.  He had a knack for spotting signs of potential in every boy or girl, no matter how 'difficult' they were alleged to be.

Silberman describes one of the children, Gottfried K, a nine-year-old boy who cried at the smallest change in his routine, was terrified of other children, was socially unaware and socially awkward, took people’s words literally and was teased by his peers mercilessly. He was ‘obsessed’ with rules, laws and schedules. When given an IQ test, asking him to say what a ‘ladder’ and ‘staircase’ had in common, he ‘failed’ by pointing out the differences that to him were far more important. Asperger saw more than 200 children with Gottfried’s profile. Some rocked back and forth or repeated the same phrases over and over. Some lined up their toys in strict patterns and would throw a tantrum if these were disturbed.

The criterion at the clinic for classifying behaviour as 'normal' or 'abnormal' was the challenges that it created for the individual child, not whether it strayed from some idealised template of psychological health.

Enlightened thinking!  We've come a long way since then.  There's still a long way to go, though...

Thank you for the link Martian Tom. That is so thoughtless the biscuit business. It would have hurt nobody to give her one and it would have changed everything for her. You understand...thank you. I am so sorry that you are having to deal with the thoughtless people. You sound so kind. I told my son that there are only differences. I think people can not understand what it is to be non-neurotypical unless it truly enters their sphere. I feel so sorry for the girl at work that you described. It seems to me cruel. I would prefer to believe that it was ignorance because then at least there is hope!

It is just sad as there is such beauty in the non-neurotypical. Compassion is everything.

Hi Mona79,

I'm not sure I can offer a great deal of help - but what you're describing sounds like the vast chasm of understanding that exists between neurotypical people and neurodiverse people.  Neurotypical people seem always to expect neurodiverse people to behave as they do, and any deviation from this behaviour is seen as 'wrong' - whereas it's just 'different'.

On an earlier post, I've already recorded an incident at my job this week.  Here's the link, in case it's of interest to you...

community.autism.org.uk/.../autistic-girl-work