What Do I Say? What Should I Do? How to support friends and family with a new autism diagnosis

Getting a diagnosis of autism for a child can be a devastating to a family. There is a huge learning curve for families of children with autism, especially in the first few years. If you are a friend or family member of someone who has a child with a new autism diagnosis, it can be a challenge to know how to support them and for some people this results in pulling away.

As a mother of two children on the spectrum, I can offer some guidance in this matter. Talking with other parents and knowing what I needed to hear has given me some ideas of what parents need during this trying time. Yes, you know your family best but dealing with autism is a unique situation that requires understanding and patience on everyone’s part.

Do Offer Support for Grieving

After the diagnosis is received, there is a period of grieving. Parents grieve for what may never be. Parents feel overwhelmed at the amount of decisions that must be made immediately in order to help their child.

• At this time, offer your support. You can say, “I feel for you. I can’t imagine what you must be going through.”
• Ask how you can be of help. I was very depressed after my son’s diagnosis and needed help looking after my infant daughter and help with housework.
• If you are over at the home, look around and see what needs to be done and offer to lend a hand. If the dishes are piled up in the sink, do them. Mow the grass, do the grocery shopping.
• Parents in shock don’t always know how to ask for help so keep your eyes open and see what needs to be done.

Feel Free To Do Some Research

Do some reading about autism so you can better understand what a parent is dealing with. It’s tiring explaining to everyone why your child acts a certain way. My in-laws never read anything about autism, which made their visits difficult because they didn’t understand our children’s behavior. Having common knowledge with parents gives them a base in which to discuss issues. Everyone is learning and adjusting to the diagnosis. Let the parents know you are all in this together. I have made a list of excellent resources at the bottom of this article.

Be Respectful of How You Bring God Into It

I was raised in a Catholic home and worked in a Catholic school. Some of the phrases I heard after my children’s diagnosis were, “God wouldn’t give you what you couldn’t handle. God must think you’re special.” After my second child was diagnosed, somebody actually said to me, “God must want you to learn a very special lesson.” My reply was, “I must be pretty stupid since I have to do it twice.” People were trying to be helpful, but comments like these made me feel worse.

Nobody knows what God’s plan is for any of us so it’s best not to second-guess. I experienced intense feelings of anger when both children were first diagnosed because I felt having two children with autism wasn’t fair. If you are a religious person, offer a prayer on the parents’ behalf asking God to grant them patience and strength. The wisdom of autism takes time to be realized. Don’t push God’s messages.

Be Aware Not To Assign Blame

Where autism could have originated from in the family tree is not a question one should ask. The research is not conclusive yet if autism originates genetically or is caused by external factors or a combination of both. The genetic question is a touchy subject among families, especially if someone in the family circle is pregnant or thinking of having children.

Complete strangers have asked me if I have a genetic problem once they know I have two children with autism. If I knew the answer to that question I’d be able to help many people. Don’t ask what could be the cause of autism in a family. Accusing different sides of the family causes hurt feelings. Accept the autism diagnosis and do your own research if knowing its origins is important to you.

Do Offer Patience and Understanding

Understand if the family needs to back out of social events for awhile. It’s nothing personal; there’s just a lot to deal with in the beginning. Depression is common with a new a diagnosis. Avoid making personal demands at this time. Our son was diagnosed three weeks before Christmas, which made for a difficult holiday. What got me through was people not putting pressure on me. If I felt like leaving a gathering early, I did. If I cancelled at the last minute, friends understood.

You feel fragile in the beginning and have no idea what may set you off. One time I left a birthday party crying because my son was left out of a trip to the park. I’ve cancelled going to birthday parties because I know my kids won’t handle the crowds. Be patient with us. We’re learning a whole new way of living.

A Little Kindness Goes A Long Way

Emotionally worn out parents appreciate any kind gesture. Bring over a meal. Offer to baby-sit to give parents some escape time. Send over a good novel or DVD (nothing emotionally heart-wrenching). Arrange a lunch date at a favorite restaurant. Hire a maid service for the family for a couple of weeks. Spend time with the person.

Keep in touch with the family

If nobody calls, you feel abandoned. Autism is not a disease; it’s a disorder, which cannot be cured but can often be successfully managed. We need to keep on living our lives. Surround us with unconditional love and let us know you’ll listen to us. Don’t be embarrassed when we cry out of the blue. Hugs can go a long way on a bad day.

Remember It’s A New Path For Everyone

Every parent who has a child with autism embarks on a unique journey. Join hands with the family and walk with them on the new path. Don’t judge; just accept the journey for what it is. Giving your time, love, and understanding will strengthen a family as they enter the world of autism. You, in turn, will learn great things too.

Recommended Reading for an Introduction to Autism:

Autism Spectrum Disorders

Can I tell you about Autism? A guide for friends, family and professionals

Grandparent’s Guide to Autism Spectrum Disorders: Making the Most of Time at Nana’s House

How Can I Help? A Friend’s and Relative’s Guide to Supporting the Family with Autism