Why It’s So Important to Have the Assessment Conversation

Something that teachers and educators really struggle with is the conversation in which they have to tell the parents that they might want to have their child meet with a pediatrician and do some assessments.  To me, as soon as Jake’s preschool teacher said those words, or something similar, I thought, “He’s autistic.”  I don’t know exactly what other parents think.

There is something of guilt, of blame, of “you should have known,” in the suggestion your child is struggling to the point that it is time to bring in the professionals.  It is very, very hard for the parents.  It doesn’t come from nowhere; our society has long placed the responsibility for children’s behaviour squarely on parents.  If a child does not follow rules or expectations, it is presumed that somewhere along the line, the parents did not teach them correctly.  It is almost always presumed.  Often, it is stated directly with comments.  “If that was my kid, I’d straighten him out.”  “I wouldn’t allow my daughter that kind of free reign.”  “What that kid needs is some discipline.”

When it comes to autism, these comments cut deep.  For much of the 20th century, parenting, specifically mothering, was seen by psychologists, the professionals that is, as a major cause of autism.  Literally, bad mothers were thought to have screwed up their children to the point of mental health disorders.  Leo Kanner, the man who first described and labeled autism, attributed the symptoms to cold, unloving “refrigerator mothers.”  From the 1940s to 1970s, the leading expert in autism, Bruno Bettleheim compared the moms of autistic children to Nazis, and his research and descriptions were widely promoted by media.  Anyone who worked with autistic children in those years did not know any other theories.  In the 1980s, parents were starting to disagree with this theory, but it wasn’t until the late 1990s that it was actually replaced with other ideas.

Parents are often blinded by their love, their hard work, or their innocent ignorance.  They are afraid of what an assessment could lead do.  Disability?  Autism?  Mental health problems?  Diagnosis?  Fear can lead them to blame the teacher, the school, the other students, the EA.  The parents may be struggling with the child too, not knowing what they are doing wrong, what is wrong with their love, with their child.  They may have worked so hard up to this point that they are no longer struggling the same way, having routines that work and a safe place at home that doesn’t lead to the same behaviours that the teachers see at school.  The highly verbal and intelligent nature of many children with autism can act like a red herring, distracting parents from the struggles that their child has when in a group or in school.

Autism Speaks adds fuel to the fear by continually referring to autism as an epidemic, searching for a cure, and citing that autism can destroy families.  The help they provide is coloured with undertones of tragedy and their worldwide recognition gives them a powerful voice.  Their website is often the first place scared parents look to, and it was the first place I looked when the thought entered my world.

You see, what this adds up to is that it is hard for parents to hear that their child needs to be assessed.

It’s also really hard for educators to tell parents that their child needs to be assessed.  Some are simply too scared.  Some don’t know how.  But it is so important.

When a child in British Columbia has an autism spectrum disorder diagnosis, they and their families are given a set of keys.  They open opportunities like support, community, and acceptance.  They give money, new ideas, and release the guilt.  It is not my fault that Jake is autistic.  I did not do this to him.  I could not have loved him any more, can not love him any more.  He has my whole heart.

Art created by Jake

See, the thing is, almost everything we thought we knew about autism was wrong.  And being scared of assessments is wrong.  They are not going to change anything about children who are perfect but struggling.  They are going to help.

Children who are autistic and don’t know it have all of the same hardships as children who are autistic and do know.  However, the difference it made for us was so incredible.  I have the ability to give Jake more processing time when I talk to him.  I have the ability to make the house quiet or find a calm space for him when he is overwhelmed and shutting down.  I have the ability to recognize when he can’t communicate and not confuse that with being disobedient or defiant.  I have the ability to learn everything I can about how he works and use that to love him better and make the whole family function better.

Without assessing him, I would still believe he is rude.  I would think that he doesn’t listen when I ask him to do things.  I would think he needs more consequences for yelling while I am putting his sister to bed night after night.  I would think maybe we are just not enforcing the rules enough.  I would be so wrong.  I have been so wrong.

Without assessing his eyesight, I would not know he needs glasses to see.  Without assessing his hearing I would think he might have a hearing problem, especially when he doesn’t respond to his name being called.  Without assessing his rash, I would not know he is celiac.  Without assessing his brain, I would not know that he is autistic.

It changes everything.

Like the first time you look through glasses and you see that there are individual leaves on the tress.  Like the first time you feel truly healthy after living gluten free for a year.

Like the first time your mom tells you that she knows you are overwhelmed, doing your best, and you need a break instead of a time out.

It changes everything.

I just really want to encourage parents to get over their fears and their innocent ignorance.  We fear what we don’t understand, and autism is something that we can understand and appreciate and love.  I want to encourage teachers and educators to get over their fears and speak love and truth to parents who desperately need to hear it.  An assessment is not the worst thing.  It is a beginning of a quest to know and support and love your child better.  This is what I want to explain to people.

Have courage.  Find and speak truth.  Grow love and understanding.

Empathy round 2

I can not say it enough.  Learning about Jake’s autism has been such an incredible key to knowing him.  It is affecting our family more and more.  As we learn more and filter what we are seeing day to day, we are becoming better parents, more understanding people.

I want to revisit the topic of empathy.  My first post on about empathy is here.  We have talked about it in rounds, my husband and I.  We see Jake’s kindness, thoughtfulness, concern for others all the time.  And then all of a sudden something seems off and I can see why people say that autistics struggle with empathy.  Something as simple as, ‘I hurt myself, I need a minute, then a band-aid, and then I can come put the tv on for you.’  It makes me shake my head and wonder, “Kid!  Where is your understanding?”

However, I believe that this seeming lack of understanding does not truly correlate with a lack of empathy.  I think it is more social cluelessness, as explained in this definition and example.

– Social cluelessness

Not being sure how to act without making things worse if someone for example suffers a tragic loss; if they want to talk about the painful event or if they don’t want to be reminded. I think it must be hard for everyone to know, but even more so for a socially clueless Aspie.

When my only friend in 5th grade lost her father I had no clue what to say or do and was too shy to ask anyone for guidance (the information about her father’s death didn’t elicit any advice or instructions from my mother, who was very young and rather Aspie herself) so I just avoided my friend for a long time instead. A shameful thing that I felt bad over for years but I can now have compassion for myself for really not knowing how to handle it.

– Ing, site-author

https://insideperspectives.wordpress.com/emotions/empathy/

What appears as a lack of empathy is probably just Jake trusting that I am mom and therefore I will always be fine and I am here to help with his needs, which according to him often include turning on the tv at the time of his choosing.  I think it is more ego-centrism and cluelessness than genuine lack of empathy.  Ego-centrism is just as common in people with autism as social cluelessness.

“Aspies find it easy to get called selfish just because it doesn’t occur to us to enunciate concerns for others or to ask unprompted casual questions about them. I can remember once getting called selfish for not asking after the health of as family friend who had been seriously ill (he recovered and is alive now). It simply never occurred to me to ask after it as I knew I would hear any news I needed to.”

– Maurice, Aspie from Scotland

https://insideperspectives.wordpress.com/emotions/empathy/

In my previous post, I discussed the idea that autistics actually experience an overwhelming sense of empathy.  This is not the only opinion, however.  One writer I have really enjoyed reading is an adult on the spectrum who disagrees with the idea that autistics have an over-developed sense of empathy that is simply misunderstood.  She also thinks there is nothing wrong with a genuine lack of empathy.

Generally, when I feel emotionally overwhelmed by another person’s emotions, it’s related to my alexithymia (emotional dysfunction). In short, I have trouble regulating my own emotions and I have trouble discriminating between emotions that are “aimed at” me and emotions that are “aimed at” someone else. If I encounter two people having a shouting argument, my emotional reaction is the same as if I were the target of their shouting, as if they were both angry at me.

I don’t think this is empathy. I’m not sharing their emotional state (anger) so much as feeling like the target of it. If I were sharing the emotional state of the people in the shouting match, wouldn’t I feel like shouting at someone, too? Instead, I feel frightened and intimidated. I feel an intense need to escape from a situation to which I’m nothing more than a bystander.

In fact, in this kind of situation, the only person I’m thinking about is myself and how uncomfortable I am. There I go again, taking my own perspective. My distress at the situation might outwardly appear to be empathic but my internal reaction is a great big “MAKE IT STOP, NOW.”

http://musingsofanaspie.com/2013/01/17/the-empathy-conundrum/

This idea is supported by other bloggers, explaining that our definitions of empathy are the problem, not the actual lack of empathy.

Now, let’s look at what society defines empathy to be.  Empathy, as many of us imagine it, is the ability to feel bad for someone else.  However, is that really what empathy is?  Let’s examine the true definition of empathy, as reflected in the American Heritage Dictionary:

“Identification with and understanding of another’s situation, feelings, and motives.”

http://reinventingmommy.blogspot.ca/2013/01/does-my-child-lack-empathy.html

This suggests that yes, it is hard to identify with and understand another’s feelings and motives.  In conversations with my husband, I would quickly say that we both struggle with this.  Any one of our arguments can be traced to a misunderstanding of the other’s feelings and motives.  Rather, we all need to work on empathy, and recognizing that it is a struggle for Jake and other autistics will give us more patience when we deal with them.

When I was a kid, I couldn’t really empathize well. Without realizing it, I would say things that hurt people’s feelings (I still do). The aspie doesn’t really “think on the fly” during conversations. There’s a delay and we often don’t pick up on non-verbal or non-obvious cues that we’re hurting someone.

http://life-with-aspergers.blogspot.ca/2007/10/aspie-and-empathy.html

However, this has little or nothing to do with the concern, care, and love that autistics feel towards others.  It may not even be as important as it is often portrayed to be.

That’s not to say that I don’t experience concern toward other people. Simple concern for others, though, isn’t so much empathy as sympathy. Sympathy is a concern for the wellbeing of another person. It can exist in the absence of the empathic act of sharing an emotional state with that person. It often arises from empathy, but it doesn’t have to.

http://musingsofanaspie.com/2013/01/17/the-empathy-conundrum/

Empathy has nothing – NOTHING – to do with love or one’s ability to care.  Think about it. Have you ever loved someone that you just didn’t always understand?  Maybe your autistic child?  Beyond that, did you ever have a “crush” on someone who seemed so outside of your type?  Just because you look at your child and can’t identify how he or she is feeling doesn’t mean you love him or her any less.  Have you ever loved someone unconditionally?  The definition of unconditional love seems to imply that it is outside of one’s ability to understand or do or say anything.  They simply love.

http://reinventingmommy.blogspot.ca/2013/01/does-my-child-lack-empathy.html

Yesterday we took Jake to Wal-Mart to look at the Lego.  Just to look.  It’s a reward for him, something special to do.  While he was there memorizing all of the packaging, another couple and their kids came into the aisle as well.  When it became clear that they were also there to look at the Lego and not just passing through, Jake quickly became uncomfortable.  My husband, who like me is quickly learning, got down at his level and had a quick, quiet conversation.  Jake explained that he ‘didn’t want to cause trouble when we [Jake and his dad] have to leave.’  As in, walking out of the aisle past these other people would disrupt their Lego looking and be uncomfortable.  So they solved the dilemma by agreeing to leave out the far end of the aisle.

This to me screams of both the ability to care and the ability to put oneself in the position of another.  However, it doesn’t actually relate to true empathy according to the definition.  Jake and his dad treated the other people in the store the way that they would have wanted to be treated if they were in the same position.  Treating others the way they want to be treated.  A lovely way to treat people, but not actually understanding what the other people DID want.  They may have been looking for a gift and wanting Jake’s suggestions.  Because no conversation happened, no actual understanding of another’s motivations happened.  No one had any idea of the others’ feelings or situation.  In fact, my husband was the only one in this particular scenario to truly demonstrate empathy, and it was towards Jake.

I think that teaching our kids to be kind, to care, to listen and understand other people is what is important.  Eventually this will translate to sympathy, and when it really matters, empathy.  But all kids and even adults need to work on it.  Knowing that the mental gymnastics required are quicker, more difficult for autistics is something that will help me to be more patient and sympathetic.

Not Alone

As April and Autism Awareness month roll on, I have really noticed that it is amazing how people can help each other.  I have been spending every minute that I have to myself online reading the thoughts, wisdom, and challenges of others around the world.  Autistics, parents, researchers, you name it.  It is truly incredible, inspiring, and thought-provoking.  I am growing, seriously growing, and my goal of becoming an amazing, educated, know-what-I’m-talking-about, autism mama is morphing into a passion.

It turns out there is a lot to learn! Ha!  I know!  Those of you out there who have gone before me are laughing.  I knew I didn’t know things.  I had no idea how much there is to learn.

I am incredibly thankful to these people, real people, out there, in the real world, sharing their revelations, thoughts, experiences, and ideas with me.  I don’t know them.  They are just giving, opening their lives and minds to the world, and oh!  It’s a community!  It’s people like me!  Like Jake!  Like our family!

I have found great inspiration in blogs from other moms.  I have read hours of stories of their struggles and victories, their hopes and their experiences.  Equally inspiring are the words of adults on the spectrum, who have shared their stories.  I have devoured books and combed blogs.  The words of the people who live with autism are awe inspiring.

What’s more, they are friendly.

There is a real, authentic community of people growing that is welcoming and kind.  It is hopeful and encouraging.  It uses words I need to wrap my head around and get used to, but I know now will become an easy part of my vocabulary in time.  Things like neurodivergency and stimming, autistic and proud.  The following was written by one such autistic, and it is resonating deeply with me.

“I’m not alone” doesn’t have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn’t alone, that there’s a whole community that will embrace him because he’s one of ours.

– You, Yes, You, Need Autistic Friends, Neurodivergent K 

I am going to be a part of this community.  Jake is going to be a part of it.  He will not be alone, he will not be a minority, and he will have a voice, and a place where he is among others like him.  Where he is not different.  Not special.  That is funny to me.  And wonderful.  There are many places where he will be special.  Where he cannot help but be noticed.  Where he is a minority.  But out there, in the internet, there are more of our people.

Thank you people.

Our authentic community surrounds us. I am adding our stories to the rest, sharing education with those I know personally and those who now read this out there online.  What an incredible thing.

Differences

I have been learning so much.  I have found so much hope and strength in learning.  Autism is not a disease.  It is not a sickness.  It is a difference in the way the brain develops at a very young, possibly pre-birth, age.  The pathways and connections in the brain don’t develop the same way in Autistics that they do in neurotypical people.  So I may have learned that when I make eye contact, it is a happy feeling and people smile and giggle.  Jake may have learned that a gentle pressure on his back is a happy and comfortable feeling.  Jake may have learned that too much noise is painful and that conversation moves too quickly, words can pile up like pancakes that have to be slowly taken apart to get down to the meaning.  I have learned that autism is not anxiety, it is not dietary problems or sleep problems.  Autism often results in behaviour that we don’t understand, in meltdowns, tears, or stimming behaviours (self-stimulating behaviours, such as excessive scratching or spinning objects).  However, these are also not a disease.  They are simply communication that we don’t understand.  A different language.

A difference in his brain.

A difference.

A different language?  A different understanding?  A different experience?

A disability?  Maybe.

A different ability.

Not a disease. Ok.  So then, is there a cure?  Is there a recovery?

Can there be a cure for something that is not an illness?  No.  No cure.

Can there be a recovery from how your mind works?

I have read amazing stories of non-verbal Autistics who learn to use communication devices, or even learn to speak.  I have read incredible stories of people who struggled socially and grew to hold careers and marriages and families.  I have read of Autistics who become great at eye-contact, who love sarcasm, jokes, and being with people.  Is this recovery?

Is it recovery if no one can tell that you are Autistic?

Is assimilation and becoming like everyone else the goal?

No.

The goal is Jake’s happiness.  The goal is lessening Jake’s anxiety.  The goal is helping Jake develop friendships that he values and that value him.  The goal is Jake feeling loved, accepted, fearfully and wonderfully made.  The goal is for Jake to be able to function in society at the best of his ability, enjoying his role in that society.  I don’t really care if people think he’s quirky, different, sensitive, or Autistic.  I just want him to know that he is incredible and that he can handle it.

He needs to be able to handle life and know in his heart that he can.  Confidence.  Confidence is a goal.

To these ends, supports are great.  If he learns more skills from his therapy sessions and can apply them to his encounters with others, that is wonderful.  If he needs technology to help him articulate his ideas or help him focus in a busy environment, let’s do it.  If I need to talk to his class in a few years and explain that high fives can be painful, I can do that.  If he wants me to stay out of it because he knows what he needs to do, then I am blessed.  If a special diet and tons of extra omega-3 help, then that’s what we are having.  Anything I can do to make life easier for him, I will.

When we first got into this, I actually asked our service provider if she had ever seen someone be cured from their autism.  Bless her, she was gentle with me.  She must have had great faith that I would learn.  She told me no. Some people do find that they are able to work with people and within society. Their autism becomes almost invisible and does not affect anything.  But it is there.  It is how their brains are working!  Autistic people work hard to find ways to communicate, to work with the rest of us who take social interactions for granted.  But that does not mean that it isn’t harder in a room with background noise.  That doesn’t mean that it might be harder in the bright sunlight, or when there are too many colours decorating the classroom.

Would I want to change Jake?  Take away this difference?  This autism?

I would want to take away his fear.  I would want to take away his anxiety.  His sleep problems.  His tummy aches.  His sensitivity to light.  His sensitivity to noise.  I pray for him.  I pray for meaningful friendships for him.  I sometimes would like to be able to talk to someone else in the house and not be interrupted.

But I would never change Jake’s brain.

This is who he is.

I will work with him to encourage his passions.  If that means that he grows up to collect Star Wars Lego, well, he won’t be the first adult with toys.  More likely he will be an environmental scientist or animal protector.  If he wants to talk all day about his special interests, then I will help him become a teacher.

Who he is has nothing to do with anxiety, dietary or sleep problems.  Those things have recovery, cures.

Autism does not.  It is not a negative.  It is a positive.  It helps him focus intently.  It gives him amazing skills of observation and memorization.  His long term memory is incredible.  He is a super-empathetic person who cares greatly about others and about animals.  He is creative, methodical, and very good at patterns.  These are the blessings of a brain that works just the way Jake needs.

I have worked through these ideas a lot over the past few months.  I really believe in them.  The reason that they are so important is because I really value Jake.  I mean, I REALLY value him.  If there had been an option, as there is for Down’s Syndrome, to determine genetically before he was born that he would have autism, I would not have cared.  I care about him.  Autism is a beautiful, complicated, and at times difficult part of him.  But I want the whole package.

The following is from the Autism Speaks Canada Mission Statement:

We are dedicated to funding global research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

http://www.autismspeaks.ca/about-us/mission/

There is a problem here.  I am hesitant and cautious about these goals.  The causes and prevention of autism?  The cure for autism?  If they find that eating sugar or something like that causes autism, and that by skipping it we could prevent autism, that would be interesting.  Would I do that?  Probably.  If they find a genetic marker for autism?  Would I stop a pregnancy that was likely to produce a child like Jake?  Never.  And this is the problem.  Research is pointing to genetics along with environmental factors.  I don’t believe there can be a cure for something that is not a disease.  I don’t believe that preventing children who have the potential to possibly be autistic from being born is remotely ethical or desirable.  I don’t even know if disorder is the right word.  It’s so negative.  Yes, there are negatives, but doesn’t everyone have things about themselves that they would change?  I will stick with difference.  Differences need to be accepted, to be appreciated, and understood.

And so I don’t agree with the mission of Autism Speaks.  I can’t agree with this mission statement.  My son doesn’t need to be cured or prevented.  He needs to be loved, respected, and cherished as he is.