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.

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