23 December 2014

Let's Get Real About Empathy

The world is designed to encourage the comfort of majority mainstream neurology. Our social rules are based on the needs of the majority; our priorities are based on the comfort of the majority; our understanding of others is based on our expectations of the majority.

A member of the majority can move through the world fairly comfortably confident that they are mostly getting it "right". They can pretty accurately guess at the thought processes and emotional experience of most people, because "most people" are similar to them. They can pretty safely assume that other members of the majority are having a similar experience to their own. It's easy to empathise with their own group.

That said, it's also a pretty safe bet that any group with a common neurology is going to find it easier to relate to members of their own group, to share a common experience, and to more naturally empathise with one another.

If I've learned anything over the past 16 years of parenting an autistic person and mixing with all sorts of people in all sorts of settings, it's that if we look through the right lens, autistic people are not as socially disabled as we have been led to believe. It's really just that the majority neurology dominates the narrative, and all social expectations and rules are based on that reality.

The world is not set up for the comfort or success of autistic people, and the majority group has shown itself to be pretty weak at empathising with the experience of autistic people. The majority group likes to think that autistic people are poor at empathising with majority members, but the reality is that every group tends to be pretty poor at empathising with other groups. So it seems to me, stating that poor empathy skills are exclusive to autism is misleading at best.

In my opinion, all people are socially awkward and clumsy when placed in the wrong context, especially towards people unfamiliar to themselves. It's just that the majority group is lucky enough to be born into a world where the context and rules are designed specifically for them.

06 November 2014

London McCabe, Rest in Peace

 London McCabe, aged 6, thrown off a bridge into icy water by his mother.

In response to yet another child-murder death in the autism community. My heart is heavy today.



"Oh but you have to walk a mile in their shoes," they tell us, when sympathising with mothers who murder their autistic babies. In reply to that I must ask, "But do YOU genuinely walk a mile in their shoes?" Because if you think you do, you must at some point ask yourself how bad things need to be before you would consider murdering your child. To walk a mile in their shoes requires you to try to imagine how they got to the point of making that decision, and decide when you would reach that same point.

Where's your line? When will YOU be willing to murder YOUR child?

Let's explore that a little. How bad do things need to be? If your child doesn't talk to you, should they die? If he is withdrawn and seems disconnected, is that enough for you to kill him? Maybe that's acceptable to you. But then, what if she is unable to try new food because it terrifies her so much - is that enough to make you kill her? Where's your line? If he has daily meltdowns, is that enough to tip you over the edge? What if she seems like she will never toilet train - will that make you murder her? If your child never says, "I love you," will that be enough for you? If your child has seizures, is that the ticket to certain death at your hand? Maybe if your child barely seems to sleep? Where is YOUR line?

It is highly likely that you will be appalled by these questions, horrified at the idea of you killing your child, for any reason at all. In which case, I hope my point is made. You cannot walk a mile in the shoes of someone who will take actions that you would never take yourself.

Hopefully if you've read this far, you now realise that the majority of parents find it impossible to imagine killing their children, no matter how hard their circumstances are.

It is never appropriate to say that because a child is disabled, the parent deserves a larger dose of our compassion when they commit murder. No matter how hard we try, those of us who see our children as the wonderful little people that they are, simply cannot understand the workings of the mind of a parent who kills their offspring.

It is NOT POSSIBLE to walk a mile in their shoes. And quite frankly, the idea disgusts me.

RIP beautiful babies. So sorry to see yet another light snuffed out.

27 March 2014

Inclusion Support and how best to use a teacher's aide in a mainstream classroom

Scenario: non-verbal autistic student included in a mainstream early childhood classroom.

In order to meet the needs of this student throughout the day, the school provides a full time one-on-one learning support assistant (LSA).

Student attends school and is generally happy. Relationship with LSA is developing nicely. Feedback to parents is initially positive, and then over time, it evolves into statements expressing concern that the student is "still not speaking", and still not independent in the classroom, as well as not progressing at the same rate as the other children. LSA is concerned that their time isn't being distributed fairly amongst all the students. Further investigation reveals that the strategy to teach the student to be independent has been to leave him to his own devices.

Observation says that he often wanders aimlessly around the room during unstructured activities. He enjoys the other children, and is making connections despite being non-verbal.

What's wrong with this scenario?



Why is the LSA there?
  1. The LSA was hired specifically to support one student. 
  2. Her time is not meant to be spent with the other children, and there should be no resentment about spending all of her time with the individual with identified special needs.
  3. The priority of the LSA should be to spend time with her inclusion support student. If she steps away from the student to allow independent play for example, her time should then be spent creating/working on additional supports for that student, such as PECS (Picture Exchange Communication Systems) and schedules. 

"Unfair"
  1. It is not "unfair" that the LSA is not working with the other students as much as with her autistic student. She has been hired to provide support for one student who needs her in order to cope in the classroom.  Period.
  2. Saying it is unfair is like telling a wheelchair-bound student that it is not fair that the other students in the room don't have wheelchairs, and therefore the wheelchair needs to be shared amongst everyone throughout the day. Clearly a ridiculous idea!
  3. The LSA in this case, is the autistic student's wheelchair, and there should never be a requirement to share her. Without the LSA, (such as when he has to share her), the autistic student is without his "wheelchair" and cannot access learning opportunities.

"Not progressing quickly enough"
  1. Quickly enough according to whom? The pace of progress must be allowed to be determined by the child.  
  2. Adults involved need to learn to set aside their expectations and any inner discomfort and allow things to progress naturally at the pace of the child's abilities. 
  3. Forcing an agenda on the child will inevitably lead to conflict - either in the classroom, or between the teacher and parents, or even at home because while the child might try to comply at school to please everyone, the effort involved could mean exhaustion and meltdowns at the end of each day at home. 

 "Still not speaking"
  1. The child is autistic non-verbal. Why is there an expectation of them to speak at all, ever? It should never be the objective or expectation of a teacher/LSA to make an autistic child become verbal.
  2. Expecting this child to speak is outright discrimination. Part of their disability is lack of speech. You wouldn't be forcing a child with cerebral palsy to walk! This is the same. Let go of this expectation and figure out a way to adapt to the situation.
  3. Verbal speech is not the only way to communicate, and is certainly not always the best way to establish communication with someone who is autistic non-verbal. 
  4. Guaranteed, this student is at least as frustrated as the LSA when it comes to communication. For a start, their needs are not being clearly communicated and therefore also are not being met. If this student could talk, they would be doing it!
  5. Get creative and find a way to communicate with the child - one which doesn't require them to step into your paradigm of communication. Look at visual tools, sign language, ipad applications, to name a few. Think outside the box, research, embrace the challenge of connecting deeply with your student!

"Still not independent"

  1. Independence can only be achieved with scaffolding and a detailed educational strategy. 
  2. When does the teacher expect independence to occur? Who is setting the pace on this? See the above statements about "progressing quickly enough". 
  3. It is a common mistake to expect students to somehow innately know how to be independent. 
  4. LSAs are often removed from one-to-one time with students "in order to build independence". But if the student is not previously taught how to be independent, how are they supposed to succeed? 
  5. In these situations students achieve very little and often even nothing, and this is usually seen as a failing in the child. Very unreasonable!
  6. Removing support to create independence is never going to work. That's like someone being expected to learn to drive independently without an instructor present.
  7. The student may need several years of support before they can achieve full independence. Indeed full independence might never occur. This potential reality needs to be acceptable.

09 February 2014

Food fears!

It has always been hard to get the right foods into my boy. I'm sure that's familiar to many of you. In my son's case, he has a dreadful phobia of trying new foods. It terrifies him, utterly, so I have never really forced the issue. Instead, I've regularly talked to him about nutrition and worked with him to make sure he is getting just enough of the food groups.

Over the years he has occasionally said he is willing to try something new, and I usually try to come up with something similar to foods he already enjoys. Sometimes he will manage to try them, and enjoy them (or hate them). And sometimes he completely freaks out and can't cope. Sometimes this has upset me because I have invested so much time and energy into cooking things "just right" for him. It's hard not to get emotionally involved, but I try not to add that pressure to him of course.

Obviously I have hoped he will eventually get past this issue, but as it's a phobic reaction, I also see that it could be a lifelong problem. 



The whole idea of "if he's hungry he'll eat" doesn't apply. My son truly would starve to death first. He has gone on school camps and not eaten for a full three days, if food wasn't right for him. (I'm sure you can imagine, he is a complete wreck when he comes home). There's a world of difference between fussy and phobic. Phobic isn't rational. Reasonable arguments about why tasting something new is a good idea, don't really break down phobias. A person with a phobia can even accept that they are being irrational, but that doesn't diminish their fear. (I should say too, those camps I mentioned above, in one instance I had actually pre-cooked the meals at home and taken them out to the camp cooking staff, but they didn't present it right, so he had trouble trusting that it was really my cooking. So he wouldn't touch it. The very idea that it might not be trustworthy food was enough to completely freak him out. Suffice it to say I stopped making him go to camps, as they were obviously not a positive or worthwhile experience for him at all.)


He's 15 now, and the other day as he was helping me with groceries, he said, "I think maybe I will try new foods this year Mum. At my age, I really should give it a go." So we went through the freezers at the supermarket and picked out a bunch of Healthy Choice frozen meals, all entirely different to pretty much anything he has ever liked. 


My theory was 
1. He was willing 
2. I don't have to cook them so there's less emotional involvement on my part. 
3. He was willing. 
4. A lot of these meals are softer so he might enjoy them more.
5. He was willing. :)

Here they all are lined up in the freezer. Some of these (the spicier ones) are for me, but who knows? In my dreams I hope he will try those ones as well.

Fingers crossed!


Relax and let them flourish!

My son (15, ASD/ADHD, Anxiety, Sensory), has been spending a lot of time socialising with friends online over this past year. They get together on Skype and voice chat while they play games. Pretty much since that began, he is socialising all the time. Some people think that isn't socialising, but I will always debate that point - it's socialising 2014-style. NT/ASDs alike, are partaking and love it. It also offers a level playing field socially for ASDs, because nobody has the advantage of better body language skills.

Although they aren't in the same room, I think they are learning much better social skills, because they spend so many hours together and have to learn how to regularly negotiate a constructive dialogue. They learn to work as a team. They learn to negotiate through tricky conflict situations. There's a lot of positive peer pressure. They learn how to be self-protective online and perhaps a little more private. On the other hand they are also more likely to share their problems with each other and seek help. I love it.

My son hangs out with a group of about 6-10 peers in voice chat every day. He is the only ASD, and as it turns out, is also often the group leader, as he also is a very talented and creative Game Master in a bunch of roleplay games they like to do together. He works hard at preparing for these, and it's really fun to listen to him, because he is so clever and articulate as he guides their characters through his rich and complex imaginary worlds.

And today, he unexpectedly managed to get them to all leave their computers for a while and meet at the mall. What a surprising turn of events! I never would have expected him to be the initiator of face-to-face contact.

To me, the lesson in here is, if you let someone with an ASD be who they are, and interact in a way that works for them as an individual, instead of imposing some kind of NT "ideal" on them, they will flourish.

So my message to you today is: 


 Let them be themselves, let them flourish!


19 January 2014

Autism Acceptance, not cure. Be on the right side of history.

On the subject of curing homosexuality.
Let's establish the facts:
- Some people want cures for their gay children.
- Many people (particularly gay people) are offended by this.
- People who want a cure are frequently offended by gay people being offended at cure rhetoric. They think gay people should calm down and let them want their right to a cure. After all, their burden is greater, because their child's homosexuality is extreme, so they should have the right to relieve their suffering and the suffering of those around them.

On the subject of curing autism.
Let's establish the facts:
- Some people want cures for their autistic children.
- Many people (particularly autistic people) are offended by this.
- People who want a cure are offended by autistic people being offended at cure rhetoric. They think autistic people should calm down and let them want their right to a cure. After all, their burden is greater, because their child's autism is extreme, so they should have the right to relieve their suffering and the suffering of those around them.

------------

I'm sure you can see what I am trying to demonstrate there. Put any minority group where cure rhetoric has been part of their history, and you can see how offensive and bigoted those statements are. Sure, find ways to alleviate suffering, but recognise that being pro-cure means eradicating an entire neurology, with its own set of strengths and wonders. Sure, it has challenges too, but so does every person on this planet. Your child would no longer be the same person if they were cured. It's that simple. When you say you want to cure them, that's conditional love, and nobody wants to hear that from their parents.

Sure, some people want to be cured. Just because that want exists, doesn't make it less offensive. It just means they have been conditioned, by society, family or whoever, to uphold that same bigotry towards themselves. My belief is that it is our job to help these people feel more self-accepting, and more self-loving.

When a minority group tells the majority that they are being offensive, it is not okay for the majority to then suppress that message, no matter how much you disagree. It is time to sit up and listen. 


I have created the following image for people to copy, use and distribute far and wide. Let's get this message out!



06 January 2014

Inclusion - Indistinguishable from peers?

I have seen the following graphic around at times, and it's a perfect representation of what these various words mean.

 

Exclusion is when access is not granted.

Separation is when access is granted to something else.

Integration is when access is granted to be present in the room, but not to participate as part of the group as a whole.

Inclusion is when all students are granted access to the same opportunities, regardless of abilities, in the same environment.

With proper inclusion in a classroom setting, each person should feel that they belong in the group, they are not being segregated, and they should be provided with equitable access to whatever is needed in order for them to learn.

So in an obvious example, if a student needs their wheelchair and various technological tools in order to learn, those would be readily available. It's a no-brainer, right?

A new graphic is needed to describe what very often happens to students with autism. Here's one I prepared earlier:


In the case of these students, the meaning of inclusion has become distorted. Teachers call it inclusion, but really, the focus is making these students as indistinguishable from their peers as possible. The more indistinguishable, the higher "functioning". The purpose is, in theory, to prepare those students for the "real world".

However, as you can see represented in this graphic, those students will never really be completely indistinguishable from their peers, because they are simply wearing a mask and hiding who they really are.

The equivalent for the person in the wheelchair is having that wheelchair taken away and being told, "No, but you must work on being like the rest of the students. You must walk, at the expense of all other activities and learning." You can imagine the amount of wasted energy and angst experienced by this student.

And the amount of energy and anguish that goes into maintaining the "indistinguishable" mask is extreme. This means that very little (if any) academic learning occurs. In fact, the primary lesson these students are living with, day in and day out, is that they are not adequate, and they must be more like other people in order to be deemed adequate - and that this is the most important thing on which to focus.

So not only are these students not benefiting from academic opportunity, they are also taking a battering at the physical and spiritual level. There is no equity in this. It is harmful. It is wasteful. It is self-defeating for all concerned.


The job of teachers is to teach individuals, each with their own learning requirements. It is not to force the students to conform, to any arbitrary ideal of "normal", nor to a generic one-size-fits-all model of education. Teachers often say there is no time to do more, but I would have them realise that while they are wasting immeasurable energy on making their autistic students pretend to be indistinguishable from their peers, they could be putting (much less) energy into adapting their teaching style to accommodate those same students, without trying to change who they are.

Autistic students are different, not defective, and certainly not less. 

If those students are allowed to be who they are, they will be much happier, they will be much easier to manage, they will be learning more - and perhaps will even be reaching their true potential. And a little bonus is that happier autistic students are actually more likely to naturally develop social skills.

What kind of teacher would you rather be?

03 January 2014

Stimming - socially inappropriate?

If stimming is socially inappropriate, who gets the privilege of making that decision? And what about people who stare or laugh at stimming? Or worse, what about people who find stimming somehow discomforting, and consequently try to control the innocuous behaviour of others (ie: suppress stimming behaviours), in order to restore their own comfort?

When my child was 6, an "expert" told me I needed to pin his arms to his sides to stop him from hand-flapping. That was when I first realised so-called "experts" often have no idea what the hell they are talking about, and are also often just imposing their opinions on others.

Don't accept "expert" opinion as gospel, people! If it doesn't feel right, don't do it!

Click the links below to further your insight into stimming and social "appropriateness".
Socially appropriate.
"This innocuous phrase has turned obnoxious for me. Here’s an example of why: I’m reading a book about teaching social skills to children with Asperger’s and I come across a sentence stating that children should be allowed to time to engage in stress-reducing activities, including “self-stimulation in socially appropriate forms.”"
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About Stimming
"Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby I had forgotten about."
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An interview with Emma about Stimming
A:  Do you like the word “stimming” ?
E:  No.
A:  Is there another word you’d prefer?
E:  Yes, but words are not as meaningful to me as they are to those who talk all the time.
A:  If you could choose any word other than stimming, what would it be?
E:  Self-care
  ------------------------------------------

Your child is not stagnant...

Don't worry. 

The child you have at this moment, age 2, or 5, or 9, or whatever, is not stagnant. Your child will not be at the exact same stage of development into the future. They will grow up, and along the way, development will occur.

Don't look at your child now and think of what they won't be able to do when they grow up, instead think of the things you have yet to teach them, and figure out how to get them where you hope they can be.

Imagine the possibilities, not the limitations. 

It will be the greatest gift you can give. And as a bonus, you'll enjoy them so much more!