Dealing With Diagnosis: Parents

                Learning your child has autism is a life-changing event.  It can feel overwhelming and you’re likely to have a lot of emotional reactions until you settle into this new world.  Everyone reacts to the diagnosis differently.  Some react with relief that there is finally an explanation.  Others react with disbelief, surely there must have been some kind of mistake?  Emotions can run the full gamut and this is the part I want you to listen to carefully:  They are all okay.

It’s going to take months if not years to fully process and understand what has happened.  Take the time and actions that you need.  Some people immediately get on the computer and start googling and ordering books.  Others need to take time to themselves to process what has happened.  Whatever you need to do to cope with this is okay.  There is no right or wrong answer.

                Your child is going to need you more than you ever could have imagined.  You owe it to yourself and to them to do whatever it takes to keep you on your A-game.  You are going to have to do more than you ever thought you would have to do as a parent.  You’re going to have to fight and fight hard.  Fight to get your child the help and access that he or she needs and deserves.  Fight against apathy and misunderstandings.  And fight the autism itself to draw your child back from an isolated world of repetitive ritual.  You’re going to have to investigate every program, school and therapy.  And you’re going to have to monitor everything closely. This is a marathon session and you need to pace yourself accordingly.

                I’ve had two children diagnosed with autism.  The first diagnosis hit me like a Mack truck.  I wasn’t prepared for it, I wasn’t expecting it.  I ended up taking two days to myself, not talking to anyone.  I sent my son to his grandparents’ home because I knew that I needed to get my head together.  I did not want to start treating him like a disease.  I wanted to still see him as a little boy and I knew I needed time to do that.

                That’s my first piece of advice for you.  A child with autism is still a child first.  They have challenges, no doubt about it.  But there is still a person in there with a unique personality and something to offer the world.  I’ve gotten to know several children and teenagers with autism and beneath the ritual and distraction, they are amazing individuals.  They are often some of the most genuine people you will ever meet, since they have little to no interest in playing social games.  When they are excited, the sheer delight they display is contagious.  I have often compared autism to a backpack full of rocks.  In the race of life, our children struggle more, need more help and often arrive late to benchmarks because of the extra weight they carry.  It’s not fair and it still makes me angry, but that’s the reality that we need to deal with.

                My second piece of advice is to get some kind of support network and/or therapy in place for you.  You are going to need help and there is no shame in asking for it.  Therapy can offer you a place to deal with the emotional backlash of the situation.  My husband and I have both gone to therapy in order to process our emotions and deal with the overwhelming stress in our day to day lives.  As I mentioned earlier, after the diagnosis, I sent my son to his grandparents for the weekend.  I needed that and I don’t feel guilty about making that choice.  You will probably have feelings of grief and anger to cope with.  That’s a normal reaction.  You can work with friends or family but be prepared that they may not get what you’re dealing with.  I actually had one person tell me that they totally understood what I was going through because their child was shy, too.

                There is a big difference between autism and any other disability.  In my opinion, a social disorder like autism is actually more limiting than a physical one like being in a wheelchair.  There are no physical cues to let others know that they are dealing with someone with autism and often the missed social cues can lead to anger and frustration on the part of the general public.  Thus anyone who tells you that they know exactly what you’re dealing with because their child is shy, a picky eater, hyperactive, etc, is well-meaning but wrong.  Absolutely wrong.

                It’s not uncommon for parents coping with a recent diagnosis to feel surges of anger towards other children and their parents.  It can seem monstrously unfair that these other people get to breeze through life while you’re struggling.  You know what?  It is unfair.  Hugely unfair.  Feeling anger doesn’t make you a monster or a bad person.  It’s normal and natural.  Acting on it would be completely unacceptable but feeling it is fine.  Ask your friends to avoid talking about their children for a time if it’s upsetting you.  If they are good friends, they’ll understand.  Give yourself a break from potentially difficult situations like the park or playgroups.  Excuse yourself if you need a minute to work through your feelings.  There are lots of options and you should have no hesitation about finding one that works for you.  I stopped taking my son to the park and to playgroups for several months because I found myself feeling furious towards the other parents and their children.  There are still times where I find myself angry.  Recently, I was in a mall and I heard a woman screaming at her children to shut up and stop bothering her.  She noticed that I was looking at her and asked me what my problem was (although she used a few profanities as well).  Annoyed, I told her that my children had autism and that there were times when I would give anything to have them be aware enough of the world to be badgering me for toys or trips or anything.  I walked away after but I hope that I gave her something to think about.
                An ordinary parent can celebrate milestones.  A parent of a child with autism earns every single one.  There may be some that your child does meet on time and without special effort but there will be many that require painstaking repetition and adjustment.  Be proud of your child’s achievements.  It doesn’t matter if they learn to speak two years after everyone else.  Celebrate the victories.  You will have earned them.
                You may have an instinct to not tell anyone about your child’s diagnosis.  I certainly did at first.  I told myself that I could hide it and fix it and then no one would ever need to know.  Luckily for myself and my children, it didn’t take me long to realize that was impossible.  My advice now is to tell everyone that your child interacts with on a regular basis.  It’s all right to take some time for yourself before making this particular revelation, but teachers, day-care providers, sitters, family, etc, all need to know.  One of the big things that makes a difference in how well a child with autism progresses is the level of consistency across different contexts.  It can be hard to ensure that without disclosing the diagnosis.  Also, the diagnosis provides an explanation.  People can often be left wondering just what is up with that kid who constantly plays in the corner or who doesn’t make eye contact.  Autism isn’t something to be ashamed of.  It is no different from any other mental challenge.  Children and adults with autism deserve compassion, respect and understanding.
                There are going to be a lot of challenges ahead.  There is enough stress without adding guilt into the mix.  So here’s the truth:  Your child’s diagnosis is not your fault.  There will be people who want to assign blame, be it to cold mothers, vaccines, toxins, etc.  People will desperately want to know what you did wrong so that they can comfort themselves with the knowledge that it can’t happen to them.  Making them feel better isn’t your problem.  You’re not under any obligation to answer their questions and it’s your choice to decide how much you want to discuss with them.  At this point we don’t know what causes autism.  There are strong suggestions of a genetic component and other evidence suggests environmental triggers.  But, honestly, it doesn’t really matter.  Even if they discover something does guarantee autism, there is no blame to you.  You did not decide or choose for your child to have autism.
                In my experience, parents of special needs children are more compassionate and more dedicated to their children’s well-being than any other subgroup I know.  We work incredibly hard, sometimes for very little evident result.  You can do that, too.  If you’re looking at this site, that tells me you care about your child and you want to learn how to help them. Be gentle with yourself and proud of your efforts. You’re not going to get everything perfect, but you are going to be trying your best.  That’s all anyone can ask for.

                Find your local or online special needs community.  It can be a great relief to be with other parents who understand and get it.  They can also be an invaluable source of practical advice and tips.  I recommend seeing if there is a special needs playgroup in your area.  It can be both informative and inspiring to learn what other parents are going through.  And it gives you a chance to get out of the house and enjoy a relatively stress-free environment.  I don’t recommend socializing exclusively within the special needs community, there are advantages to mixed groups as well, such as your child getting to see more typical interactions.  But being with those who are in the same boat as you can be a very positive experience for you and your child.

                Get rid of your guilt.  Do it through therapy, friends, positive thinking, however you can manage it.  Guilt will weigh you down and hold you back.  It will make you second-guess your decisions and rob you of the joy in your life.  It doesn’t help you or your child in any way.  It’s natural to feel regret but don’t let it poison your existence.
                You are going to be one of the most important people in your child’s life.  They only have two parents and you’re one of them.  No matter what therapy program or school they end up in, they are still going to spend the vast majority of their waking hours with you.  You’re going to determine their rate of progress by what you do.  That may seem overwhelming and even a little frightening, but it’s the truth.  That’s why it’s so important for you to take care of yourself.  You can’t help them if you’re burned out or depressed or crushed with guilt.  Make your choices based on what will work for you.
                That’s enough lecturing for now.  Stand strong and believe in yourself.  One way or another, you can do this.

1 comment:

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).