What to say after the diagnosis?

 

How to Help

I've been thinking a lot about what has been helpful along the autism journey.  Specifically, I've been thinking about what was useful, what was helpful, and what was terrible when our son was first diagnosed at age 3.  I did a quick google search to see what is out there for friends and families to read as a guide of what to say to their loved ones when a diagnosis is given.  The results were incredibly DEPRESSING and not very substantive.  So, as I've been there in my own experience, I'd like to add to the conversation.  

When your friend/sister/brother/person in your community has a child diagnosed with autism; the shock, grief, anger, frustration, worry, WORRY, and host of like a thousand other feelings come steaming in on an express train that the recipient would rather run from than get on.  Thankfully, many children are getting diagnosed earlier and earlier, and the benefit of giving young ones who might be on the spectrum a diagnosis and then receive subsequent therapies to help the child; far outweighs the possible down side if the professional is wrong.  Which is lame for the parents experiencing this in the moment, but totally worth it on the other side of things. 

Autism is very difficult in some cases to diagnose, and therefore, erring on the side of caution, and giving  a 2year old a ton of speech therapy and ABA is likely only going to help the child.  But I digress, as what is really helpful to a parent in this situation is not to parrot this back to them, it is to......

• Listen.  Ask them about what is happening, what they're feeling, how they're handling this news.   This parent is sifting through 100,000 web pages and thinking that they need to look into changing EVERYTHING in their lives.  If you can lend an ear, and help them sort through their thoughts, that could be very helpful.  

• Encourage them to exercise if they already do so, or go for a walk if they don't.  Drinking a glass of wine with a friend is helpful, but exercise tends to be a healthier option in a time of very high stress when as a parent, you also feel you need to be ON.

• Encourage them to take solace in their partner if they can.  Autism is statistically hard on a marriage.  Encourage the couple.  Kiddos that need extra help are going to need their parents together if it's possible.

• Offer free babysitting.  Research and fighting with insurance companies takes time, crying in front of your kiddos is not recommended here.  Talking through courses of action with your partner is time consuming and doesn't work with an audience of children.

• Pray with them, or recommend meditation.  Again, your friend is in an incredibly high stress time.  A time that can feel beyond one's capabilities.  Mommy having a panic attack or short circuiting her brain is only going to hurt all involved. 

For a parent with a child who is newly diagnosed, I recommend the following:

• Take a breath.  You've got a lot of information to cover and though you're going to want to do it all as soon as you possibly can, try to get a realistic feel for what you can accomplish.  In my experience, trying to change the diet, starting 3 new therapies and researching a stem cell transplant all at once pretty much guarantees  failure (and in my case, implosion followed by crying).  

• Think about what you know is true, and go from there.  If your child responds to a therapist or program or activity positively, keep with it.  So much can be accomplished with a willing participant.  

• Experts are going to have different opinions.  Ultimately, you'll need to make choices on who you think is right.  And, know that if your choice wasn't the right one, you can go back and try again. 

• Know that this journey you're on is unique to your family and your child.  Every case is unique, as every child is unique.  One of my favorite quotes is: "Comparison is the thief of joy".   In this case, its even more true.   

In all, for all parties involved, I recommend leading with grace when you can.  Grace for yourself as a parent, grace towards your child, and grace towards the experts and the information that is coming your way.  When I started on the autism parent journey, I kept telling myself:  "I just have to be better."   Meaning I just had to work harder, try harder, be MORE, in order to get through what was in front of me.  Looking back, I wouldn't recommend that attitude.  I think I would have caused myself a little less brain damage and had fewer heart palpitations if I had said to myself: "I just have to do the best I can with what I've got and give a lot of grace."