Talking to Your Extended Family About Autism

Autism, Special Needs Parenting

Many of us will be seeing extended family and friends during the holiday season.  Usually friends and family are a great source of support.  However, when your child has autism or other special needs you may need to talk to them ahead of your visit.  Discussing your child’s strengths, behaviors, as well as likes and dislikes can help everyone be on the same page.


My Experience


I consider myself incredibly fortunate in this area!  I have friends and family that love my son and have accepted his diagnosis.  They listened to me and learned about how ADHD impacts his ability to interact with them.  It truly takes a village and I am so lucky that my friends and family have supported and loved me and my son!


However, it didn’t start out this way!  As I mentioned in a previous post, I had people close to me question my son’s diagnosis, tell me I was ruining his brain because he was on medication, and that his behavior was due to my poor parenting.


To which I always say, “I WISH IT WAS DUE TO MY PARENTING!!”  That would make it so much easier.  I could change what I do and he wouldn’t have to struggle every day!


As I became more knowledgeable about ADHD and its effects, the more confident I was talking about it.  It wasn’t so raw anymore.  I didn’t question every parenting decision I made and whether it was the right one for him.  I spent a lot of time reading and learning about ADHD.


I also started focusing on his strengths and pointing those out to my friends and family, instead of just focusing on the behaviors that make me want to tear out my hair.


I truly believe it was important for me to talk to my extended family about my child’s ADHD diagnosis and I knew, in time, they would come around.


Potential Issues / Concerns


We are the experts on our children!  We know their strengths and their triggers.  We know their favorite foods, to not use loud voices, Dad has to read a story first and THEN Mom can say goodnight, the only pair of shoes they’ll wear, etc.


We’ve also spent a lot of time learning about our child’s diagnosis and the best therapies, meds, and services.  We’ve lived the life.


However, our family and friends have not, therefore, you may need to think about their perspective and address some of the following issues.


Problem #1: Family doesn’t believe diagnosis.


This is one that I hear a lot.


You’ve talked to your family and friends about your child’s development.  You talked to them about getting an evaluation done.  You shared the results of the evaluation.


And then they tell you that they don’t believe the test.  (“That doctor doesn’t know my grandson.  He’s perfect just the way he is.”)


They might believe your child is just a little bit behind, that you’ve spoiled them, and you just need to be tougher on them.


It can seem like you’re being blamed or judged which is very hurtful coming from family and friends.


Problem #2: Family is unfamiliar with autism.


“She doesn’t look autistic.”


This is something else you may hear.


You might also hear:

  • “But people with autism never look at you and never hug you.  She does.”
  • “He’s not autistic because he has a lot of words.”
  • “She doesn’t flap her hands in front of her face like this kid with autism in my church so she isn’t autistic.”


Our family and friends may have some very different ideas of what autism is and is not.


They may have seen an autistic person in a movie or know of someone in their church who has autism.


Chances are you are way more familiar with your child’s diagnosis and you’ll have to correct some misconceptions about autism your family has.


Problem #3:  Family may be worried about the impact on the trip/holidays.


It can be very challenging for us to take our young kids with autism, ADHD, and other developmental delays to relatives’ homes.


I imagine it’s also challenging for them.  Previous experiences may not have gone well.


Family and friends might have tried to interact with your child before.  They might have been on the receiving end of aggression.  They may have cooked a big dinner only to have it thrown on the floor or left untouched.


It’s possible your family and friends might also be nervous about how your child will react to them, especially if you aren’t around them much.


Solutions Ahead!


I hope you’re not too discouraged at this point!  There are strategies to help your family and friends understand your child’s diagnosis.  As I mentioned above, you are the expert on your child.  You know all the little things that you child loves and needs and can’t stand!


Strategy #1: Inform and Ask Questions


Decide on how you want to tell your friends and family about autism.  Also, decide on the main points you want to cover.


If you are worried about emotions getting in your way of being able to clearly talk about your child (SAME!!!), write an email.  You can get your thoughts out and read it through and tweak it before you send it out.


You can also schedule a phone call, Zoom, etc. when you have some time to talk to your family.


Sending resources is another great way!  If you have a favorite video or website or blog post, send that to your family and then talk about it after they’ve had time to look them over.


Next, ask if they have any questions.  They won’t become an autism expert overnight!  So, check in with them and ask what questions they have about the information you sent them or the description you gave them.


Also ask if they have any questions about how the visit or trip may be impacted.


Keep the conversation going!  This isn’t a “one and done” discussion.  You’ll need to come back to this as your child gets older, develops new skills, as new challenges come up, etc.  Keep the lines of communication open!


When my son was little, he couldn’t tell people why he was upset and frustrated or why he talked out in class or that he needed to take a break.  All they saw was a kid who wasn’t behaving and seemed to “fly off the handle” for minor frustrations.


I had to be his voice and educate his teachers, other parents, and my family about his diagnosis and how it affects his behavior.


It was incredibly hard!  I cried a lot!  Why did I have to fight so much for people to understand ADHD and to care about my son?


But I quickly learned that no one else was going to!  As his mom, I needed to be his voice and try my best to educate family and friends and teachers.


Strategy #2:  Tell Them What to Expect


Be specific here!


How does autism impact your child?  What are some behaviors your family is likely to see and why?


Here are some examples:

  • Adam is sensitive to new people and noises.  When we first get to your house, he isn’t going to want hugs or to say hi.  He will probably stay by my side.  He usually cries.  Sometimes he gets so upset that I need to take him to a quiet room for a few minutes.
  • Emma has a hard time looking at people and she usually doesn’t respond when you call her name.  It might seem like she’s ignoring you, but this is something we’re working on.
  • Carter has a very small variety of foods he’ll eat.  I’m working with his therapist on how to slowly expand his meals.  However, in a new place, he will only eat foods he is very familiar with so he might not eat Thanksgiving dinner.  I’ll bring his foods and give those to him while we’re eating.
  • Leah isn’t using words yet, but she will grab your hand and take you to what she wants.  She might also try to push you out of the chair you’re sitting in.  This means she wants to take you to something she wants.


Additionally, give your family information about your child’s other likes and dislikes (toys, activities, shows, etc).  Model how you play with your child or do a particular game with them.  Show them what works!


Also, be specific about dietary restrictions.  Are there certain foods your child isn’t allowed to have?  Hates?  Loves?


 Strategy #3:  Find a Connection and Get Involved


I love this one and I think a lot of extended family members will love it too!


What’s a common interest your son and family member share?  Cars?  Trains?  Being outside?  Peanut butter and jelly sandwiches?


Helping your parents or other family members find a common interest can give them a way in with your child!  They’ll have that connection.


Maybe grandma can have your child’s favorite snack at her house.  She can serve it at Thanksgiving dinner with everything else.  Then there’s at least one thing at the table your child will eat.


If your child loves puzzles or colors or numbers, let your family know!  Give them some insider information!


Learning your child’s likes and interests is really helpful and gives your family a way to be involved!


Extended Family, Autism, and the Holidays


Traveling and going to holiday outings with small kids is challenging for most families.  Doing these things when your child has autism or other special needs adds in more stress and planning.


Throw in extended family and it may seem overwhelming!


However, I truly believe having these discussions ahead of time is incredibly important.  You can give them important information about your child, allow them to ask questions, and help them find a connection with your child.


Part of being a parent of a child with special needs is being their voice!  We are the expert and we are their advocate!


If you have any strategies that worked well for your family, I’d love to hear about them!


Here are some other websites that might be helpful:


Educating Extended Family Members About Autism

Extended Family and Friends

7 Tips for Bonding with Your Autistic Grandchild




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