Sunday, July 22, 2012
Long time readers of this blog will know that it's a myth that people with Asperger's syndrome can't empathize and that if a situation is explained to them, they can certainly feel emotion and put themselves "into the shoes of another". The question is, can a person with Asperger's learn to empathize automatically and without the need for explanation.
Empathy is a tricky thing to define but one thing is for sure; it isn't about feeling sorry for someone. It's about either feeling as they do, understanding how they feel or having a reciprocal feeling.
Some of the biggest challenges for people with Asperger's syndrome lie around the interpretation of gestures, tone and expression in both directions, sending and receiving. Gestures, tone and expression are the primary means of communicating the human emotional state with talking and writing being used far less. In fact, quite often spoken expression confusingly communicates the exact opposite of what the emotional state is; for example when a person says "oh, that is just GREAT!"
Given these communication difficulties, the question then becomes less about empathy and more about expression. I guess you could ask, can a neurotypical person learn to express their true feelings in the moment? Can an aspie learn to interpret those feelings and express empathy in a way that can be understood by a neurotypical - again, in the moment.
It's clear why people with Asperger's syndrome often need a detailed explanation before they can get into the shoes of another. It's just not normal for us and since we're using our own emotional state as a guide, our reactions to news and events are less empathetic of others and more interpetive of our own internal state. Neurotypicals may be surprised to hear that your own empathy towards us is usually not in a form that we want either.
We've all heard those "horror stories" about people with Aspgerger's syndrome who either act indifferent or laugh at funerals. Sadly these incidents lead people to presume that they are cold and "without emotion". The problem here is that their emotional state is not the same as the majority, not that they don't have emotions at all.
An aspie with strong beliefs may feel that a person has moved on to a much better life. They may feel that Grandma has finally been reunited with Grandpa and that they will be happy as a result. In this case, they're empathising with the recently dead, not the recently bereaved. This doesn't make their reaction any less empathetic and it certainly doesn't make them a "cold person". It's the interpretation of others who misread the target of the emotion that is at fault.
As people with Asperger's syndrome pass through life they, like everyone else, acumulate a lot of "social wisdom". Eventually they learn that their laughter, though well founded, has no place at a funeral and that the correct "group feelings" are of loss and sadness. The first time that these expressions kick in, they may be a little forced or fake. Later as the aspie begins to get into a proper understanding of loss, usually because they suffer loss themselves and have an emotional state to relate to, those expressions become real and stronger.
It's not usual to see an older person with Asperger's syndrome overwhelmed by sadness at a funeral, even one for a distant relative. Once those feelings of sadness are tapped into, it's difficult to let go and almost impossible to control the intensity of feeling. It's been said that people with Asperger's syndrome often feel emotion more strongly than others. I'd be inclined to agree with that.
I used the funeral example above to show a progression from delayed and even wrong emotion to instantaneous "empathy". Clearly it is possible for a person with Asperger's syndrome to learn how another
is feeling but they need a few key things to happen;
The Situation must be clearly stated
In the case of a funeral, it's easy to tell that one is occurring, hence a person with Asperger's syndrome can easily tap into the feelings (and rules) for prior funerals. If the feelings of a neurotypical match those of a previous occurance, you need to let your aspie know. Sad puppy-dog eyes aren't necessarily going to communicate what is needed. You need to "use your words".
The Target must be obvious
In the funeral example, the target wasn't the deceased person, it was the grieving family. Our aspie projected empathy towards the wrong target. Usually in domestic situations, the target is more obvious but just in case, make sure that your aspie knows that the target is you. Perhaps even say "can you understand what I'm feeling?" or "can you see it from my point of view?" These things will help your aspie to find the target.
The Emotion must be familiar
One of most commmon and obviously "doomed to failure" empathetic problems occurs when a woman experiences strong period pain and expects her male partner to be empathetic. We understand stomach aches and headaches, which are similar but still far from the same but that's about as much understanding as a male can bring to the table. You need to use expressive language such as; "it's like being repeatedly punched in the gut" to get the idea accross. Empathy works best when you can relate to an emotion or feeling so if you can relate your feelings back to something your aspie will understand, then do so. It's your best chance.
The Requirement for Empathy must be Stated
Aspies, and male aspies in particular, are problem solvers. Throw a problem at them and their brains will go into overdrive to solve it. The problem is that quite often their partners don't want solutions, they simply want empathy. Unfortunately, too often the need for empathy is presented in the form of a problem to be solved. If you don't want solutions, just empathy, then please say it clearly.
The moment must be Right
Picture this, you're in the middle of a fight with your partner and then suddenly he turns around and asks you if you could get him a bowl of ice cream. It's not going to happen. You're going to say "get it yourself!" The same applies to empathy. If you ask for empathy in the middle of a fight, you're simply not going to get it. Choose your moments carefully.
So, is it possible for your aspie partner to empathise in the moment without you having to spend time explaining things to them?
No. The main reason for this is that it's not yet possible for us to read each other's minds.
Is is possible for you, to communicate your needs in a short series of words and get the empathy you require without a long discussion of why? Yes, definitely yes but it will take a bit of practice. Start with longer and more expressive conversations and then over your years as a couple, you'll find yourselves increasingly able to anticipate each other's needs.
Of course, if you've already been married 10+ years and it's not happening, then there's a good chance that there is something wrong with the expression techniques that you and your partner are using. If that's the case, see a counselor - or better still go on a marriage encounters course. You'll find that a change of technique makes all the difference.
Saturday, July 21, 2012
Today I'm blogging over at Special-ism and the subject is Disciplining Children with Special Needs, click over to have a read.
Discipline and Kids with Special Needs
Discipline and Kids with Special Needs
Wednesday, July 11, 2012
This post is a response to;
Want to commit suicide because of my son’s autism
Tammy, who blogs at Autism Learning Felt (http://www.autismlearningfelt.com/) was looking through the search words used to get to her blog when she saw “Want to commit suicide because of my son’s autism”. Her post is a heartfelt response to the unknown person who searched for the phrase.
Please read Tammy's post.
A short while ago, there was a wave of support for a similar search using the term "I wish I didn't have Aspergers" and it was great to see the community come together to provide support and encouragement for the person in this position but I'm keen to see whether or not we're willing to open our arms to the carers.
I hope so.
The Issues between Advocates with Autism and Carers
Unfortunately, there is one big problem which stands between the advocates with autism and carers of people with autism - and it's a misunderstanding.
Advocates with autism see themselves as fighting to be accepted, not changed and certainly not cured. They see society as a major problem but they often see their carers as problems too. Their view is person-centric and it's all about themselves and others like themselves. They're usually less concerned about what they can't do and more focused on what they can. It's a great positive attitude which makes it much easier to accept oneself and be the best that you can be.
Carers have exactly the opposite view. Often they are carers of people with autism who are unable to self-advocate. As such they aren't as attuned to the internal thinking of those under their care and can only report what they see from their point of view. Since they are focussed on their job as carers, they think in terms of the things they are required to do for the people under their care. Obviously if a carer needs to do something, then it registers as a deficit. Carers still blame society for many of the issues but they also find issues with the "disabilities" of the people under their care.
Carers and advocates are mostly thinking the same things. They have similar needs and they are fighting for many of the same rights and support. Unfortunately their different frames of reference often put them at odds with each other.
When Carers Burn Out
Carers are often buried under the weight of their responsibilities. Since they are usually parents or close relatives, they feel that they have a responsibility to the people under their care and they are unable to escape from their situations. Caring is hard work and long hours. It often requires the carers to put their working and social lives on hold while they address the needs of their children well past the years they expected to. It's little wonder that carers often feel burnt out. It doesn't help either that the people who need carers often have communications difficulties and are unable to make it clear just how much they appreciate the help.
We all know about carers who reach breaking point and end up harming those in their care. These are well documented cases - and the autism community has rightly risen up in anger. It's understandable. There's no excuse to ever hurt a person who needs assistance. If you can't cope, then at least hand them over to "the system". If nothing else, it's a much better option than harming them.
Unfortunately, the autism community and our society are both neglecting carers on the edge. These carers aren't harming their children but they aren't coping either. They shouldn't be condemned but consoled. They need support to lighten their load, they need options to provide them with breaks and most of all, they need reassurance that their efforts aren't in vain.
This is one of the major issues I have with fundraising for autism research. Those funds aren't required to increase the scans for autism, or to print placards and leaflets about immunization - or even to support scientists in their search for the elusive autism genetic code. No, that funding should be used to provide services and assistance to people who are already on the autism spectrum and their carers. They should be used to improve the quality of life of families - not to try to detect and remove autism before it is born.
The Message to Carers
I know that I've strayed a little from the main point of this article but somehow it all felt important. My message to carers in general and to the carer on the edge who wrote; “I want to commit suicide because of my son’s autism” in particular is;
Thank you carers! Your care and your dedication is very much appreciated by those whose lives you enrich every day with your presence. We know that it's not an easy task and we know that sometimes we seem less appreciative than we should be.
We know that your life has not gone in the direction you probably imagined. We didn't choose the difficulties we face either but this is who we are and we are willing to work with what we have. There are a lot of positives in our life, if only you could see them from our point of view. I would love it if you could spend less time looking for miracle cures and more time simply trying to understand what it feels like to be me. The autism blogging and facebook communities are there for you. Please talk to these people because they hold the keys to that understanding.
We want you to continue doing your best but we need you to look after yourself too. Take regular breaks, arrange respite care and seek counselling for yourself. An exhausted carer can't help anyone. Don't consider permanent solutions like murder and suicide. If you find yourself thinking along these lines get help - it will get better but only if you ask for help. There's no shame in asking and your life and my life are both too valuable to risk if you're feeling overwhelmed.
Finally, don't sweat the small stuff. It doesn't matter that our reading level is behind that of other kids our age or that we don't eat with our mouths closed. Don't paint our future with the word NEVER. Don't give up, just wait and see what happens. Don't withhold activities and opportunities simply because you think we won't cope - give us a go and if it fails, try again next year - we may surprise you.
Looking from the outside in might make you feel sad but if only you could see from our point of view, you'd understand how happy we can be too. Don't interpret a grimace as an expression of pain or a jumping episode as simply exercise - these are often expressions of extreme happiness and if it is you that gets this response from us, then please understand that we've just given you a "million dollar smile".
Tuesday, July 3, 2012
We are a society obsessed with betterment through numbers and it seems that we are constantly trying to find ways to have simple numbers prove our worth in society.
Films, for example, are rated by the number of stars a reviewer gives them - or by their gross takings at the box office but neither of these is a personal rating applicable to you, the viewer. We've all had times where we've disagreed with critics and we all know that box office success doesn't always mean that a film is great.
The same applies to other parts of our lives. People who engage us in conversation want to know what type of car we drive, where we live and what we do for a living. They seem like harmless enough questions but quite often these people are fishing for the clues which will help them either outrank you in some way - or become insanely jealous.
Of course, our lives are far too complex to be defined by such simple comparisons but that doesn't stop people from trying - particularly if they have the numbers on their side.
Believe it or not, school grades and awards are just another ranking. Unfortunately, they're a ranking which can destroy young lives if they're taken too seriously.
"You'll never get a good job if you can't get good grades", a parent will often say, "you'll end up being unemployed or collecting garbage for the rest of your life".
Such statements aren't helpful - and they're not true either. We live in a world where the "white collar" middle-management class is top-heavy and surplus - and there aren't enough tradies to go around. People can live without a project manager but leave them with a blocked toilet for a few days and they'll pay almost anything to have it fixed.
Even those of us with good grades are at the mercy of our social skills. It's the main reason why so many people with Asperger's syndrome work in jobs far below their capabilities and certification - or not at all. It's not what you know, it's who you know, how you relate to others and how well you fit into normal social conventions.
The Three "R"s
No doubt you've heard of the three "R"s; Reading, wRiting and aRithmetic. These are core skills which will be needed by our kids throughout their lives regardless of the career they pursue. They will need to be able to read signs, fill in forms and calculate costs as part of their daily lives. The three Rs form the basis of all other parts of learning and need to be developed in the school years because our capacity to learn drops off sharply in our twenties.
These skills take precedence over everything else including, science, religion, Shakespeare and art.
So if your special needs child is failing Shakespeare, ask yourself; are they improving in reading, writing and basic arithmetic? These are the things which really matter.
You're probably interpreting the three Rs as having kids who can read books, write essays and perform pages of mathematics. These a great ideas but let us be a little looser in our interpretation.
- Reading is to communicate via unspoken language. You'll find that there are signs to be read all around us but only some of them have words. Have your child interpret iconic signs as well as words. In fact, iconic signs are often an easier place to start. Start with the basics such as ladies and gents toilets and then move up to less obvious ones like Stop and give way. Make sure that you child understands the meanings of these signs since reading without understanding meaning is pointless. When iconic signs are mastered, work on worded signs, street names for example. Show your child how to reference street names in a directory or GPS as you drive. Reading is not just about books.
- Writing is a means of communication via written language. Just as the first writings were pictographs, so too can your child's first written communication. Have them draw things that they want such as food and drink. Leave bottles and cans with labels about for them to copy - you'll find that they copy the words too. Don't stress over legibility - I know plenty of doctors who can't write legibly today. Don't stress over backward or transposed letters either. It is a pain and it is disconcerting when it continues for years but it's not necessarily a sign of dyslexia. Be patient with your child's stresses and remember that low muscle tone which is common in children with Aspergers syndrome, can make writing very uncomfortable.
Ultimately, if your child has too much difficulty forming letters, then give them alternatives such as touchpads or computers to type on. Remember that writing isn't about letter formation, it's about getting ideas down onto paper in a form that others can understand.
- The idea behind arithmetic is that your child should be able to conceptualise quantity and adjustments to it quantity. You'll find very little everyday life mathematics that involves multiplication and division Most of the time it's simply addition and subtraction. Fractions rarely make an appearance and many people can go through their entire post-school lives without raising numbers to powers or using algebra or calculus. For most of us, mathematics is all about determining how much change to expect when buying things so that you can tell if you can afford something and if you're being "ripped off". With that in mind, take your child on trips to the shops. Give them small amounts of money and ask them to buy what they can. Lolly shops with patient storekeepers are great for this exercise and it's this kind of maths that is far more important than pages of exercise problems.
Beyond the "Three Rs"
After the three R's come social skills and the ability to form concepts. Usually neither of these even warrant a grade at school but they're critical skills. Social skills are far more critical than than grades, degrees and diplomas when it comes to getting a job - and they're even more important when it comes to keeping it. If your child isn't learning appropriate social skills at school, then get them involved in extracurricular activities. These can include sports, scouting, chess clubs, movie clubs - anything provided that there's a social aspect to it.
The ability to generalise from concepts is critical too but for some reason, this isn't even a skill that is taught or acknowledged. It's simply expected to materialise from nowhere. Unfortunately, it's not something that happens easily when a child has Asperger's syndrome. In those cases, it needs to be taught explicitly.
Put Away the Report Cards
We'd all like our children to get great marks and we'd all like them to get student of the week or citizen of the term but the fact is that sometimes our child's differences work against them. Lets not fall into the trap of comparing our child's metrics with those of other children. It gets in the way of real learning.