Dealing with Diagnosis: Friends and Family

                Watching someone you care about struggle isn’t easy.  In our society, we’re not taught how to help people who are undergoing a crisis.  We teach children how to save someone who is choking but not what to say to someone who is dealing with a death or divorce.  I’ve written this to help you so that you can help them.

There have been many well-meaning people who ended up hurting me horribly after my son’s diagnosis.  They told me that it was God’s plan or that I must have done something during pregnancy or that I was overreacting.  There were days when I was honestly surprised I didn’t slug someone.  But I managed to keep control of my temper and remember that these people who were irritating me to the point of wanting to scream were actually trying to be comforting.  Failing.  But trying.

Definition of Autism:

                Let’s begin with a short explanation about autism.  The Diagnostic and Statistical Manual of Mental Disorders defines a person as having Autism Spectrum Disorder when they meet the following criteria:

1)       An impairment in social interaction with at least two of the following characteristics:
-          marked impairment in non-verbal behaviours such as eye-to-eye gaze, social interaction, facial expression, body postures and gestures.
-          failure to develop peer relationships appropriate to the developmental level.
-          a lack of spontaneous seeking to share enjoyment, interests or achievements with other people.
-          a lack of social or emotional reciprocity.

2)       An impairment in communication with at least one of the following characteristics:
-          delay in or lack of spoken language.
-          marked impairment in ability to initiate or sustain a conversation with others in individuals with adequate speech.
-          stereotyped or repetitive use of language or idiosyncratic language.
-          lack of varied or spontaneous make-believe play or social imitative play appropriate to developmental level.

3)       Restrictive, repetitive and stereotyped patterns of behaviour, interests or activities with at least two of the following characteristics:
-          preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in intensity or focus.
-          apparently inflexible adherence to specific, nonfunctional routines or rituals.
-          stereotyped and repetitive motor mannerisms (such as hand or finger flapping)
-          persistent preoccupation with parts of objects.

                That’s a pretty hefty and technical definition.  The Autism Society of America defines autism as a “complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills.  Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions and leisure and play activities.”

What Autism Isn't:

                Now for a little discussion about what autism is not.  It is not the result of a cold and uncaring parent (the refrigerator mother theory).  It is not the result of overly demanding and perfectionist parents.  It is not shyness.  It is not the result of a lack of discipline.  Children with autism are not “bad” children.  They are children with a defined and diagnosed mental disorder who need accommodation and understanding.  It is not the end of all hopes and dreams.  People with autism can go on to lead happy, productive and independent lives.  It takes more work for them to get there, but it can be done.  There are those who suggest that engineers, scientists and computer specialists share many characteristics with those with autism and that diagnoses are more common among those professions.  They may be socially awkward but genuinely enjoy the challenges of work that requires a high degree of concentration and attention to detail.

                People with autism don’t necessarily have extraordinary talents, such as being able to do complex math in their heads or play music perfectly after hearing it once.  Only a small fraction of people with autism have what are called savant talents.  Autism doesn’t mean that a person is cold and uncaring.  People with autism can form interpersonal relationships and a great many actually want to do so but are handicapped in understanding how to proceed.  A diagnosis of autism does not mean that person is automatically dangerous.  A small fraction can be violent but often the motivation is frustration or overstimulation, not criminal intent.  You don’t need to worry about a child with autism playing with your child.  He or she might need some more supervision but they can still be great playmates.  These misconceptions can be very hurtful and I hope that you’ll avoid passing them on.

The Autism Point of View:

                There have been articulate members of the autism community who have described how they see the world.  Some describe every detail competing equally for attention, an inability to filter out unnecessary information.  Thus being out of a strictly controlled environment can be overwhelming.  An apt metaphor would be to go to a large and popular video arcade and try to have a quiet conversation with someone across the room.  Noises, lights, changes in temperature, the pressure of clothes and shoes, smells and more all compete for their attention, distracting them.  Others have talked about the strange pleasure they get from their repetitive rituals or intense observations.  One boy shared that he remembered how enjoyable and soothing he found waving a piece of string in front of his eye.  He couldn’t explain it but the emotional result was undeniable.  Some have talked about how physical pressure was able to center them and distract them from the overwhelming world in general, making them feel more comfortable in their bodies.  Another common theme is how uncomfortable and distracting it can be to look at people’s faces, how they can get lost in watching the complex facial changes and completely lose track of what’s being said.  People with autism often aren’t trying to be difficult or rude, they are using strategies that help them to cope.  The lack of compassion isolates families with autism.  By trying to understand rather than judging, you can help them to feel more accepted.

Helping the Parents:

                 The parents are going to need significant help for themselves and their children and I hope that you will be able to give it.  My advice is to always ask the parents if its okay before asking questions or giving advice or taking any action on behalf of the children.  And then accept it if they say no.  Even if you feel that they are making the worst mistake that it’s possible to make, you need to respect that they are the parents.  It helps if you can respect that they are dealing with a difficult and unique situation, one that requires specialized and unusual tools.

                Now, everyone has their own opinions on how children should be raised and if you suspect abuse, then you certainly should intervene.  However, there are many issues that don’t cross that line.  There are often many challenges that parents are dealing with and they often have to choose which ones they’re going to tackle.  They may decide that teaching a child to dress him or herself is more important than working on table manners, for example.  They may need to take extreme precautions to prevent a child from hurting him or herself, such as locking up the kitchen.  There are many things which these parents have to do which would seem shocking to those who are not raising children with autism.  When it comes to intervening, my personal litmus test is to ask myself: do I feel obligated to report this to my local child protective services?  If I don’t, then I do my best to respect the parents’ choices.

When we’re presented with something new, curiousity is a natural result.  We want to understand why and how this particular event happened.  Pestering the parents with questions is not a good tactic.  They are going to be dealing with overwhelming emotional challenges from the diagnosis.  There are many good books on the market and a huge number of websites.  Do your research yourself if you feel the need.  Once you’ve gained understanding, if you want to discuss the matter with the parents, ask permission before beginning.  And do try and be delicate.  Avoid challenges or issues of blame.  Generally, the questions I’ve found the least intrusive began with “Here’s what I’ve read.  What do you think?”

It’s hard to see people we care about in pain.  It’s a very human reaction to want to cheer them up so that they don’t feel so bad anymore.  However, the parents need to go through whatever anger and grief they’re feeling.  In our society, we often reward those who suppress their emotions and act as if nothing is bothering them.  While that’s reassuring for the rest of us, it’s not healthy for the person who is dealing with the crisis.  It makes them feel isolated and guilty on top of the emotional maelstrom they’re already dealing with.  Well-meaning phrases such as “It’s God’s will” or “The Universe doesn’t give anyone more than they can bear” can actually feel like a slap in the face rather than a comfort.  Dismissing or belittling a parent’s concerns is just insulting, especially if you yourself do not have any experience in dealing with autism.  The most comforting gesture I got was from my two best girlfriends.  They came to me and just held me while I cried.  They didn’t say anything, they were just there for me.  That meant everything to me.

Ask the parent outright if they want to talk about it or if they want to forget about it for awhile.  There were times when I just wanted to go out and forget about being a special needs parent and just be me.  Distraction is a great blessing.  It’s a reminder that while one very big facet of your life has changed, the rest of it can and will continue.  A diagnosis of autism is not the end of everything.  There were other times when I needed to talk about my fears for the present and the future with someone who wasn’t also involved in the situation.  Having someone listen without judging can be a great relief when you’re under stress.

Don’t assume that you’re an expert, even if you have a dozen children of your own.  Raising a child with autism is not the same as raising any other child.  The ordinary advice given to parents does not necessarily apply.  A child with autism who freezes when going into the dentist office is not necessarily being willful, but may be overwhelmed by the high pitched noise of the drills and picks.  A child with sensory issues is not going to eat something intolerable to them, no matter how many times it’s presented.  Even the typical “don’t worry” advice doesn’t always apply.  Such as that children don’t starve if food is available or that you don’t find twenty year olds in diapers.  Children with oral sensory issues can starve and you can find adults with autism who were unable to be toilet trained.  A child who bolts away from his or her caregiver cannot be taken camping or to an outdoor event without intensive supervision.  Trust the parents to know their children and what their limits are.

 Ask what you can do to help.  Offering to take the child for a few hours is great, provided the parents are comfortable with that.  But so is offering to help sit down and make PECS symbols (Picture Exchange Communication System).  Or calling around to local playgroups or preschools or kindergartens to find out their inclusion policies.  Or coming over to help rip all the tags out of a sensitive child’s clothes.  Or helping to make pureed food for an orally sensitive child.  Or simply showing up to kidnap the parent to go out for a cup of coffee to get a break.  There are a lot of tedious tasks that end up needing to be done and with any task, a friend can make it go easier.  One example of a very welcome bit of help is that my father offered to take my oldest son to his weekly Scouts meeting.  My son loves the meetings and it’s a good opportunity for him to socialize but it was too big a time commitment for my husband and I to manage.  My father enjoys spending time with his grandson, my son enjoys the meeting and my husband and I get one on one time with our younger son.  It’s a win-win across the board.

If you are involved with taking care of a child with autism, then you have to respect the parent’s rules and be consistent with their boundaries.  Children with autism do best when they have consistent expectations and requirements.  Telling the child that he or she can skip his or her dinner and have an ice cream treat just this once can have very long lasting effects.  If the child is on a special diet, respect that.  If the parents have decided that the child has to eat a certain portion of the meal before they can have a treat, respect that.  If the child should be required to put his or her shoes on themselves, then respect that.  And it can be just as damaging to encourage a child to perform above his or her level as it is to not require them to reach it.  If the child is at the stage of having to pull his or her pants up themselves after going to the bathroom, making them tuck their shirt in as well can cause them to become frustrated and give up.  It can take months of patient work to get the child to a particular stage and it doesn’t take much to derail all that effort.  The parent may seem needlessly picky to you, but if they’ve asked you to do something a certain way then you should do your best to do that because you don’t know what the consequences will be if you don’t.  If you’re not sure what they mean, then ask for clarification.  I would always rather get a phone call in the middle of my evening out than discover my children’s progress has been unintentionally sabotaged.

I can’t emphasize the importance of consistency enough.  While it may seem harmless to you to indulge the child “just this once,” it can actually have a huge effect on their progress.  There was a study done where rats were given a food pellet after pressing a lever.  Some were given a pellet every time, others were given one every other time and a third group was given one after a random number of presses.  When the food was stopped, the first two groups quickly lost interest in pressing the lever.  The third group continued to try until removed from the cages.  If a child receives a reward (be it attention, a toy or some other benefit) for a particular behaviour every once in awhile, it can become virtually impossible to change that behaviour.

                Be cautious with offering money.  It’s very generous to offer to pay for part or all of a child’s therapy but it can be a heavy, long-term commitment.  I recommend asking the parents privately if they would accept a donation.  If you only have a set amount or a set time period in mind, be up front and honest about that.  And don’t assume that if you only have a small amount that it’s not worth it.  Autism therapy is extremely expensive and even buying a box of diapers or a new set of clothes for a child can be helpful to the family.

                Extended family and friends can go through their own challenges in dealing with a diagnosis of autism.  It can be hard for grandparents to understand that their bright and precious grandchild has a mental disorder.  Sometimes you may find yourself feeling isolated and out of the loop when it comes to information.  You may need to take time to explore your own emotions and reactions but I urge you to avoid putting pressure on the immediate family.  However much you are coping with, they are the ones who are in the middle of it.  They need your support, as much as you can give.  Take the time to find your own stability so that you can give that help, if you’re willing.  Even small things can mean more than you know.

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Page Descriptions

Dealing with Diagnosis: Parents talks about the emotional impact of diagnosis. This is a major life-changing event which can leave people feeling isolated, angry and hopeless. You’re not alone in this.

Dealing with Diagnosis: Friends and Family offers suggestions to the extended family and friends of newly diagnosed families. We all want to help and make things better but sometimes the best-intentioned gestures can end up hurting.

Dealing with Other People's Reactions warns of some of the less than positive responses you can expect and talks about the stigma of accepting the "special needs" label.

The Autism World is an explanation of how people with autism experience the world around them. The ability to guess what your child is experiencing is one of the best tools you can have in helping and teaching them.

Tips and Tricks is a collection of suggestions and ideas contributed by parents. I’m always looking for more suggestions to share. Contact me with your ideas.

Choosing Therapies and Treatment isn’t about specific types of treatment. Instead it’s about what you should be looking for in a therapist or treatment expert. Every child with autism is unique and there’s no universal treatment.

Changing Challenging Behaviours is a basic overview of the Applied Behaviour Analysis system. While I recognize that not every child works best with the intense behaviour treatment based on ABA, the system of figuring out what is behind challenging behaviours is an effective way to understand what your child is trying to tell you. Understanding is the first step to trying to change the problem.

Communication offers ideas on how you can help your child with autism to communicate. Without an ability to tell you what he or she wants, frustration quickly leads to behaviour problems.

Referrals for Families are options for families with special needs to enjoy some of the ordinary experiences in life. It lists examples of non-therapy professionals and businesses who are willing and able to adapt to autistic children.

Finding Help: There are three sections, pre-diagnosis, getting a diagnosis and post-diagnosis. It's my attempt to give you a checklist of options.

Helpful Books: A list of books that I've found to be useful, in the order I discovered them.

My Blog is where I share new information, what's working (and not) for our family. Posted daily (mostly).