I have been researching the topic of growing up with a parent with undiagnosed Asperger’s for over a decade. I started when my mom told that she had been diagnosed. I cracked my computer open and thought, ok the internet has EVERYTHING. Let’s start there.
I couldn’t have been more wrong.
I have found a handful of articles over the years (with very few being added). The common theme- many of us felt invisible growing up and experienced deep emotional trauma, if not outright abuse.
I read every article, every comment. I clung to every word, even the ones that stung.
I quickly saw that there is a community that denies my existence and wants to shut me up, for me to bear the trauma of my childhood in the dark corners of my memories, to suffer in silence as an adult as I try to navigate the world.
They want me to remain invisible.
I have seen support groups and studies for every case of parent/ child relationship struggles in the world, except for children who grew up with a parent on the spectrum. There are tons of resources for parents with autistic children, but I found none for me.
I exist, lots of us exist. Reading through, there was relief and desperation punctuating every comment as we found each other.
I did find a 2017 article that showcases the creation of a new tool which will help autistic parents navigate parenthood. This begs the question, why would such a tool be created if there was not a need?
From what I have seen, if a person even implies that someone on the spectrum might have issues as a parent- they are accused of “hate speech” and kicked off of forums or ripped apart in discussion forums.
I would love to see a ground breaking study, therapy, online tool for children who grew up without any compass. I believe we deserve tools too.
For now, all we have exists on the internet.
(I’ve only included articles with a comment section. Full list of resources here.)
Out of all of the sites I found, I was most excited about this one. But my heart sank as I started reading:
“Please note that the ASpar is no longer open for membership or comments. If you need support please search in your local area.”
“This is a controversial topic, and you may want to have your say once you have read some of our stories. The options are typical of the responses we received. You can choose as many options as you wish, but you can only vote once. This is an experiment in feedback, and has no claims to scientific validity.”
“We hope you will honour our stories and respond with open minds and hearts.”
“COMMENTS ARE NOW CLOSED. As volunteers, we do not have the resources to run a moderated website. We cannot take responsibility for dealing with the pain and trauma some commentators report. We are so sorry. We do understand the need
but unfortunately we are no longer accepting comments.”
This is an example of the “get over it” argument.
Amanda says: February 12, 2008 at 2:06 pm
I’m sorry that your mothers weren’t as affectionate and motherly as you would have liked them to be, but I’m sure they all were trying to do the best they could. Maybe it would help if you understood what they were thinking at the time. Here is an article written by a mother with AS: Not all parents with autism are “bad”, and it’s very destructive to these parents, myself being one of them, to perpetuate this stereotype. I hope you can all understand where your parents were coming from, forgive them, and get on with your lives.
For the most part, there is a lot of great story sharing and support here.
These are examples of aggressive bullying, using strong language in attempts to crush people who are just being vulnerable with their personal experiences.
Anonymous says: December 14, 2011 – 3:50pm
You obviously have grievance with one or two specific people with Autism while you are completely ignorant of the massive amounts who are actually amazing human beings and assets to this planet. I know several NT people who are horrible as human beings but yet I do not feel the need to write articles bashing the entire neuro-group based on my personal experiences. Once you met one person with Autism, you have only met one person with Autism.
Yes, it is a pervasive disorder and it makes my own life hell sometimes, but that does not mean that all NT people within my relationship circle of friends are suffering too. In fact my vast number of friends find me to be a terrific mentor, friend and human being. My daughters adore me. I am okay despite this disorder and so are many, many others.
Want to try again with the “generalizations?”
I have an idea! Let’s start bashing blind people! Or how about blacks? I bet we can find a few of them who are assholes to make our case!
Anonymous says: November 28, 2011 – 2:06pm
A lot of Neuro typical parents do not try and are assholes too. THAT is fact. Yes, having AS does make communication with NT very challenging especially in relationships of Parent/Child and Husband/Wife. But people with ASD can be excellent parents and partners if the other NT people are willing to speak our language and take our perspective as much as they expect us to take theirs. It cannot be just one way and the ASD person has to be open to learning. This may be a challenge since all of our lives we are told that we are wrong and we (as a result) build up a resistance to perspective taking. I have a facebook page (Karla’s ASD Page) where I try really hard to help NTs understand the ASD perspective so that they can come from there when trying to communicate to their ASD counterparts. It is a plan that really works.
It is NOT one person at fault in a bad relationship but a combnation of cultural misunderstandings and blame. Just look at how the comments in this thread had turned against one another…
Anonymous says: November 27, 2011 – 10:19am
Be careful that you are not confusing AS with being an asshole or a myrid of other comorbid conditions. You guys are obviously bitter towards your parents and that is too bad but AS is NOT the only thing going on in your relatsionships. I have an amazing relatsionship with both of my adult daughters and I am actually DX’d with ASD.
So, yeah… Let us not just to correlation=causation conclusions here else we go off and write the book how blond haired parents are so horrible.
Anonymous says: September 21, 2015 – 2:58am
Yes. The NT children who must have had a really awful time because Autistic people could not possibly be great parents like NT people can be. Because the facts are that Autistic people do not lack empathy nor are they bad parents as a rule. The people commenting on this thread who have bad parents, it isn’t because of Autism in and of itself. Autism does not cause differences that would inherently negatively affect an NT child. There are many numbers of NT children raised by Autistic parents who are very happy and successful as adults. This article implies that it is not likely or possible for that to happen.
Anonymous says: September 17, 2015 – 3:53pm
Here is what is “rude and ignorant”. Classifying an entire group of people as being bad parents. The facts are more and more showing themselves as we cast our eyes to the numbers of autistic adults who are now speaking to us. There are many, many who are parents and whose children are very happy. Just like with non-autistic people there are some who are not good parents. There are some who suffer from depression, anxiety, OCD, bi-polar and other mental health issues. To make a broad brush stroke that Aspergers children are somehow suffering is entirely bigoted. To armchair diagnose your Father as Aspergers because he was an asshole is bigoted, rude and ignorant. A bad Father likely has issues OTHER than Aspergers.
Many people share their experiences here. It’s a safe space, not sure if the comments were moderated or not but I didn’t read any negative comments. This is written by the same person who wrote the article above this one.
This one is light on comments but worth a read.
Guest says: May 25, 2017 at 10:52 pm
Who is the “perfect parent”, who is the “perfect parent” for you, do your parents “shape” you, does you family “shape” you, or your friends, or your school, or your community ? Laid-back parents, disciplinarian parents, atheist parents, strict religious parents, gay parents, straight parents, depressed parents, comedian parents, workaholic parents, unemployed parents, ill parents, exercise fanatic parents, foodie parents, junk-food loving parents, anxious parents, helicopter parents, hands-off parents, loud parents, shy parents, pushy parents, easy-going parents, exhausted parents, hyperactive parents, migraine parents, professor parents, car accident parents, poor parents, rich parents, smug parents, arrogant parents, racist parents, traditional parents, feminist parents, sexist parents, abusive parents, narrow-minded parents, intolerant parents, young parents, older parents, single-child families, huge families, community families, grieving families, isolated families … the list goes on.
This site actually has some great comments, curiosity and empathy shining through on both sides. I recommend reading through.
This is an example of invalidating others experiences because of self perception of their own success.
Carrie says: 22 January 2012 at 22:28
You can be a parent with Asperger’s and still be normal. I am. Read my blog.