Parenting 101: Where Did My Friends Go? Dealing with a Shrinking Social Circle after a Diagnosis of Autism

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Have you ever known the pain and discomfort of feeling ostracized, as if you just landed on the island of misfit toys? Most people experience the feeling of being left out as a child but it isn’t very common for an adult to identify with this feeling, or is it? Often parents of young children diagnosed with an autism spectrum disorder suddenly find themselves socially isolated.

Immediately after receiving the diagnosis, parents are caught up in an emotional whirlwind of disappointment, denial, anger and grief as well as trying to identify how best to approach their child’s treatment. Many don’t notice at first, but looking back they find evidence of a gradual distancing and suddenly realize it’s cold and lonely!

Where did my friends go? Parents begin to question what is wrong with them, wondering what they did to fall into disfavor. “I’m a good neighbor.” “I remembered her birthday.” They eventually recognize they are ignored, ostracized, or excluded by friends and acquaintances they use to have and feel as if they don’t fit in anymore.

Too many parents find their circle of friends and acquaintances dwindled once their child was diagnosed and the ones they had left were finding excuses why little Johnny or Susie could not attend their child’s birthday party. Yes, social systems are prone to shift naturally over time, but changes as abrupt as these are more complicated then that.

Are some parents of neuro-typical children uneasy about allowing their children to associate with others on the autism spectrum? Do some parents think that an autistic child is less fun to play with and perhaps a bad influence on their child? Regardless of these possible theories, is the gradual social exclusion these parents experience a case of conscious rejection or is it unintentional?

From the other perspective one has to ask if the parents of autistic children are simply trapped on a merry-go-round that begins to run in opposite directions from the friends they have? Out of necessity, do doctor’s visits and treatment programs begin to eat up a lot of their free time that they once used to socialize?

Whatever the cause, the fact remains that many of these parents experience collapses in their social relationships. Despite the reason, with the alarming statistics of 1 in 110 children being diagnosed with an ASD, autism affects a lot of families and many of these parents can’t afford to lose their supportive friendship ties.

It’s during difficult times like these that parents need support and understanding more than ever. Whether this is a simple shift in common interests and activities or a fear of what is not understood and uncomfortable, it’s important to address the problem.

How to be Supportive of Parents of Children with Autism Spectrum Disorder

Think beyond a playmate for your child – You may be correct in thinking that your friend’s child with the autism spectrum disorder doesn’t engage in play the same way your child does but their parent needs you more than ever. If you received a diagnosis of autism for your child wouldn’t support from your friends and neighbors be more crucial then ever? It’s not about the kids or another playmate for your child but a kind word and a supportive gesture to help them feel supported. These parents need you more than ever.

Empathize – Beyond sympathizing with the plight of your friend who has just found out their child has been diagnosed with autism and counting your blessings, try to stretch yourself further than that. If you can push yourself somewhat to acquire an accurate sense of what their experience is really like for them, do so. The ability to truly empathize will go far in helping you continue to reach out and support them in a way that is genuinely beneficial to them.

Reflect on your true feelings – Examine your mindset and attitude about autism honestly and see what you find. It is so easy to slip into the trap of putting people into groups and generalizing about behaviors. If you find yourself assigning negative characteristics to autistic children take some time to sincerely address it and find a way to get beyond it. Educating yourself about autism will help dispel any myths, misconceptions or fear of the unknown.

Don’t jump to conclusions – If your friend has recently received an Autism Spectrum Disorder diagnosis for their child and you haven’t seen much of them, they are most likely experiencing a whirlwind of emotions and dealing with a mountain of choices. Don’t assume that you have been dropped from their dance card; they may simply be overwhelmed at the moment so don’t take it personally.

Pay attention to your language – Be careful about your choice of words when talking to parents of autistic children. Terms or labels such as odd, disabled or even special may cause parents to become upset and defensive. If you are unclear or uncomfortable about what language to use, communicate your confusion and ask them what terms are best to use.

How to Encourage Understanding as a Parent of a Recently Diagnosed Child

Provide information – Realize that people are often uncomfortable about things they don’t understand so take the time to educate them about your child’s unique way of relating to the world. Give your friends pertinent information and let them know how they can be helpful to ease the awkwardness. Encourage them to ask any questions and be open to responding to all of them if possible. Try to focus less on your child’s limitations and more on your child’s unique abilities, normalizing their strengths and weaknesses.

Confront people – If you sense your friends and acquaintances are beginning to distance themselves from you, be up front and clarify the situation before making assumptions. Use direct communication and share your feelings with them. Ask them for an honest response so you can begin to resolve any issues that may be brewing under the surface. Addressing misconceptions early on will allow you to salvage the relationship before it is too late.

Be realistic – This diagnosis will force your family system to function on a different level, which in turn will affect your social circle. Out of necessity, your life may begin to run in opposite directions from the people you know and your time may have to be allocated differently. Doctor’s visits and treatment programs may begin to eat up a lot of your free time that you once used to socialize. Even though you still need the support of your friends, you will want to associate with parents who have “been there and done that” by joining support groups for parents of autistic children. So pay attention to the possibility that your friends may actually be the ones who start to feel displaced first.

As with many social dilemmas and awkward situations, awareness and education can go a long way in making it easier for us to reach out to others. Unfortunately, we often fear what we don’t understand, especially when others experience the world very differently from us.

So, please take a moment and make a commitment to take one little step towards making the world a better place for all families regardless of abilities.

Parents of children with autism spectrum: are you finding yourself lost in a sea of confusion or feeling socially isolated? Explore this complimentary eCourse, “Parenting a Child with Autism: 3 Secrets to Thrive”.

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About Author

Imagine less worries and concerns as a parent of a child on the Autism spectrum...and more happiness and joy as a family. That's what you get when have the support of Connie Hammer, expert parent educator and coach. For more than twenty years, this licensed social worker has worked with parents to uncover abilities and nurture family opportunities that bring more love, fun and contentment, regardless of disability, into their lives. She supports parents of young children recently diagnosed with an autism spectrum disorder by offering quality parent coaching services, workshops & tele-classes to individuals, couples & groups, by phone or in person. To find out more about this internationally published expert and get your FREE resources – a parenting ecourse, Parenting a Child with Autism – 3 Secrets to Thrive and a weekly parenting tip newsletter, The Spectrum, - visit her website www.parentcoachingforautism.com.

15 Comments

  1. Excellent post with great advice not just for the parents of an autistic child but for parents of any child perceived as different or for parents of a child who committed suicide. Thanks for this.

  2. Leah @Bookieboo on

    My son has Aspergers. I’ve been snobbed several times by parents. I heard they were saying that they didn’t want my son to rub off on theirs, behavior wise. Like it’s a virus or something…

  3. This is a great post. One I have to forward to my sister.

    My nephew (8) is autistic with Turrets syndrome and is in a same class as my social butterfly son – his cousin.My son refused to attend many birthday parties and play dates because his cousin was not welcome. It truly breaks my heart to see that.
    My older son is not autistic, but after being diagnosed with type 1 diabetes he lost most of his friends due to their parents being uncomfortable to have him over at their houses.

  4. Bibi,
    Glad you liked the post but sorry that you are seeing this in action. It is unfortunate that so many children are still seen as ‘lesser then’ just because they are ‘different then’. My dream is to get this mentality to shift with the help of ongoing education and awareness – we must never give up and always be thinking about ways to promote acceptance. Here’s to positive action! – Connie

  5. Leah,
    Ouch! This is nothing more than adolescent bullying behavior. When will it ever stop? I know it takes lots of courage but I urge you to practice a comeback for the next time this might happen – hopefully you won’t need to use it but you never know

  6. Kat – You are most welcome. I hope you found a tidbit that is helpful. Is there anything you would like to add?

  7. Cherry,
    You have a very good point – it certainly applies to all forms of discrimination and situations. The key word you used is “perceived as different’, if only people would take the time to truly get to know someone before placing a label on them.

  8. This is so weird! I just blogged about who I chose tell about my 4 year old’s diagnosis today. I experienced some support from acquaintances and was completely tuned out my someone I thought was a friend. That person turned out to simply be so lacking in understanding that I think she believes “autism” is not real! Yes, I know. Don’t really need those kinds of friends. This is where I wrote about it (if you allow the link- http://wp.me/p1hjQz-89). Very good story.

  9. Oh it is so upsetting.  I was at the pool the other day and this dad was alone with his severely autistic son.   The circle of isolation around them was terrible.   The boy was splashing at people a little too much for their liking and he was trying to control him….I instead just laughed when splashed and made eye contact with the dad.

  10. I bet that eye contact with a smile was very comforting to him – it probably doesn’t happen much unfortunately.

  11. I have two sons on the spectrum and lost every friend that I had. A lot has to do with the way Autism is approached by some people. Rifts even exists amongst those who have kids on the spectrum. It is seriously so sad. Recently my best friend and I had a small tiff rooted in differing treatment philosphies. I told my husband (with a long sigh) This has taken everything from us and no one said my best friend wasn’t included in that. I’ve been turned down point blank for playdates (by friends that I have had for years) after pouring my heart out about needing nuerotypical kids for my sons to play with. No one understands us anymore and people just keep on acting as though were fine or that the kids diagnosis doesn’t affect the way our lives function now. I have figured out that this was a game changer for us and ONLY US. If you have a friend whose child has a diagnosis, find out what they need. Maybe they need small talk, maybe small talk about your new shoes from the mall might make them want to kill you. These are people with real problems. Hear them out first and be respectful of the therapies that they persue regarless of your thoughts on the matter. This is such an issue in our community-good article!

  12. We received our diagnosis yesterday. I can already begin to see that I will loose friends over this being that in the process of trying to find out what is going on with my son I have had friends that were very opossitional to an autism diagnosis. They already had a set preconcieved notion of what Autism looks like and I have just been told repeatedly by some that I need to be “consistent” (as if I hadn’t already been). It can be so frustrating to think of how many times I have felt alone and felt like I was doing something wrong. How many times I was told “Oh he is just a typical BOY” or “He is a TODDLER!”. All the while I would try to explain that something was just off. I couldn’t peg it. Even now with the diagnosis, those same friends are asking that I seek another opinion. The people that give me attitude for my sons oppositional behavior and non compliance are nothing in comparison to the ones that you are closest too who withhold support out of a feeling that they know it all! Must be nice to know it all… Sorry…I am very raw right now.

  13. Everyone know Ereka Vetrini? She was on the first season of The Apprentice, and she can now be seen on QVC selling a laser to remove body hair. She and I were extremely close friends, and her true colors came bursting out when she was disgusting and awful to me about my son with autism. She always claimed that she was cool with it, but only when it didn’t interfere with her life or being the center of attention. My family had to miss her 37th birthday celebration because my son had an epic meltdown and clawed skin off of my arm and face. She went OFF on me, but only after ignoring me in Panera right in front of her kids who know me, and I had to ask her why she was acting like a teenager. She is a terrible, hurtful, selfish person, and I can’t believe anyone could possibly be that terrible towards a special needs mother, especially a friend. She told me she couldn’t possibly believe my son would do that, and I just didn’t want to go to her party. Please tell me you all have had to miss occasions because of bad days with your autistic child. I have never been so hurt by anyone in my life. She’s also on the Wendy Williams show occasionally. If only Wendy knew what a phony person she is. How can you be in the public eye and be so terrible to a special needs family??

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