Why Parents of Autistic Kids Get Judged and What to Do About It

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Why Parents of Autistic Kids Get Judged and What to Do About It

This post is derived from my last post “Mothers, Let’s Not Judge Each Other” but is more directed towards autism and how parents of autistic kids are sometimes judged by other parents, even verbally accused of being inadequate parents in some occasions. This may come as a surprise but one has to consider the many ways autistic kids and their way of expressing themselves differs from that considered “normal” and “socially acceptable”. And when someone diverges from the norm, it unfortunately often brings out judgmental reactions from others. So what is there to be done?

Most autistic kids have some characteristics that are considered unusual in the very least. It can vary from lack of eye contact, repeating words over and over again,  having difficulty sharing toys, keeping to themselves and not playing with other kids, indulging in repetitive play such as constantly turning the wheels of a toy car without ever driving it around or pouring sand between their fingers in the playground without building anything. This comes out in countless different ways and if someone does not know the signs of autism and doesn’t realize that the child in question is autistic, it could easily be perceived as a rude, spoiled brat that doesn’t listen to anyone, the parents least of all.

Another thing that has to be taken into consideration is that about 25 percent of all autistic kids are nonverbal and a much higher percentage have trouble expressing themselves and their needs vocally. Obviously, this can be a hindrance when it comes to communication as they are not equipped to express their longings or emotions. Additionally, 78 percent have problems related to sensory processing disorder (SPD) where things that most of us can easily handle, such as bright light, loud sounds, how different textures feel against our skin etc., can turn into a negative stimulus and become a major issue. Just imagine how you would feel if all the noises that surround us, such as people talking, someone laughing, cars driving and honking, the distant sounds of a building construction, etc.,  become equally loud. Wouldn’t you go crazy? Because I think I would.

Derived from all this, it should come as no surprise that autistic kids sometimes behave differently than that of typically developing kids. It’s simply because their brains don’t operate in the same way and are, perhaps, receptive to other things than that of neurotypical kids. As a result, meltdowns are not uncommon and the same goes for acting out vocally or even physically. Sometimes, it can take a very long time to soothe an autistic child if it has had a nerve-wracking experience. And reacting in an angry manner, scolding the child, usually only backfires. As such, parents of autistic kids often try to calm their children down by any mean necessary, sometimes by leaving them be, sometimes by indulging them with things they like.

I'm not misbehaving, I have autism. Please be understanding

Unfortunately, all the above often leads to judgment from other parents who don’t understand what is going on and why the parents react the way they do. And the worst part is that most people don’t realize that the child in question has autism since autistic kids don’t look any different from other kids. As such, it is easy for people to reach the conclusion that these kids are simply misbehaving. That is exactly why the saying “I’m not misbehaving, I have autism. Please be understanding” has become a mantra within the autism community. Yet, I want to emphasize that autistic kids are not to be perceived as screaming little tantrum machines. On the contrary, they are usually very sweet and well-behaved. The tantrums are common, sure, but far from a constant. It is important for me that this message gets through as well.

Here is an excerpt from an excellent article by Austin Brown about the stress factors parents of autistic kids face. The article is called Hidden Stress: Parental Burdens Caused by Autism and was published on The Triple Helix Online on July 30, 2011. The article as a whole is wonderfully insightful (I personally identify with it on so many levels) and I highly recommend that you reed it, especially if you are a parent of an autistic child or close to someone who is. This specific excerpt is on judgment from other parents:

“Another cause of emotional distress for parents is the judgment issued by others on their child, and on them as parents [3].  The lack of definitive, visible signs of autism causes outsiders to view autistic children as “normal”.  Thus when an outsider sees an autistic child throwing a tantrum in public they pass judgment on the child.  Since children are usually a reflection of the parents, this causes stress for the parents because they are being judged as possibly “bad” parents for not controlling their child or allowing them to throw tantrums in public [3]. The judgment of the parents’ job by others causes stress because not only can the parents not control how their child reacts, they also realize that their child cannot really control many of his or her own actions.”

We as a family have been lucky in this regard and I can count it on the fingers of one hand where we’ve experienced explicit disapproval from others. Ever since our boys got diagnosed with autism, we’ve been very open about it and told those we socialize with about their condition in a matter-of-fact manner. People have been very understanding. However, the occasional meltdown is inevitable and it has happened a few times in the past year where we have been in public or among strangers and the boys have had tantrums and been inconsolable. Usually, when that happens, others just look at us with sympathetic eyes since this is, of course, not solely limited to autistic kids. From time to time, all kids act out and most parents know how unpleasant it is. But in between I have received disapproving looks, seen people shaking their heads, as if I’m an unfit parent. Only once have I experienced someone expressing their disdain out loud. I wanted to scream back that they didn’t have a clue what they were talking about but I didn’t as that would only have made my little boy more upset. So I bit my tongue and turned away. But I was mortified and I felt angry for a long time afterwards. Thus, it makes me so sad to hear that some people experience something similar on a regular basis.

I believe that the only way to counteract is to generate and encourage open and honest discussion about autism in society. In my opinion, that will slowly but gradually increase autism awareness among those who are not affected with autism personally and eventually lead to more tolerance and understanding towards those who don’t fit the mold. There will, however, always be people who don’t want to listen and will stay ignorant. But overall, I think that autism awareness is the way to go. That is one of the biggest reasons why I started this blog. Only a year ago, I was completely clueless. Only a year ago, I had such a wrong idea of what autism is. My assumptions were completely wrong. I was completely in the dark when it came to autism. And if I was this clueless, so are others. Hence, this is my contribution to increased awareness and I hope this post will be seen by as many as possible. In fact, you can be of help by sharing this post via email, Facebook, Twitter and/or other social media. Your support would be much appreciated.

Wrapping up, here is a nice little hidden camera video that shows an example of how people react to autism. According to this video, awareness seems to be spreading, it’s very encouraging. And of course, there are countless people out there who are compassionate and understanding. Hopefully, increased autism awareness only adds to that.

As always, thank you for reading. Commenting and sharing is ever appreciated. ~Ragga

32 responses »

  1. Judgement, yes we’ve all been there haven’t we? As my son got older, he’s now 11, you would think that it would be more obvious to others that his behaviour when stressed due to overstimulation, sensory issues etc right up to a full blown meltdown on the ground screaming was extremely inappropriate for his age/size and that therefore there must be something else going on eg autism. Some people do work this out and I have had offers of assistance(bless) but far greater numbers just stare, shake their heads, comment etc. I carry business card sized cards available to bulk buy from the National Autistic Society that are headed ‘this young person has autism’ and goes on to give a very brief basic outline of the condition and asks to please be understanding and show tolerance. If someone is being problematic I simply hand one over leaving me free to assist Luke(he’s too big and strong for me in full blown mode so if we’re somewhere safe all I can do is sit on the ground next to him to avoid him self-harming, that gets me some fab looks too!) and also avoid me explaining verbally which can often become upsetting or a touch heated depending on the response. Hopefully reading this info or better still looking up the website and links on the card spreads some awareness and makes even a few people think twice next time. We can but hope….

    • What a GREAT idea with the cards! And probably more effective than trying to explain while simultaneously trying to sooth/calm/watch your child. It could so easily end with angry comments and then they’ll just become more judgmental, I guess! I have to get my hands over this… Thanks so much for commenting and pointing this way out.

  2. Well wow! Well said. A very awesome job pointing out how ASD families feel. The best job of describing SPD. SPD is often over looked and affects several disorders. It’s not just affecting in ASD and Aspergers but also affects ADD ADHD and LD. Posably more not sure. In Canada we have very little sensory intergration OTs (SI) so this is the hardest part of therapy for parents to get for children.
    I remember always the first bad experience I had in public. You never for get the pain even after you get numb from going through it time and time again. We went to the grocery store before we had son diagnosed. When we walked by the vegetables, the sprayer turned on and spayed water on the greens. My child hit the floor screaming ( nonverbal at the time) he began tearing at his eyes and hitting his head on the floor. My husband was at the car our new little one in a stroller. An old man came up and screamed in my sons face ah ah ah and then said shut up brat! I was shocked and screamed get away from him. Everyone in the store turned. I was covering my child with my body instantly. Tears also coming down my face. I had no idea what caused him to fall. I had so much anger at the old man. I was mortified as people looked on scoffing at me. My husband picked me and him off the floor. Stoped our baby from crying and asked what happened. When I told him he went looking for the old man but lucky for him he didn’t find him because cops would have been called for my husband that day. We went home with out shopping and I never got over the seen. You never get use to the stares but you do get use to the pain. I’m not alone though. I’m not alone. So many others can say this is what I walk through and here is my battle scars I am a mom with a ASD,Aspergers, ADHD, ADD, LD child. Thank you for posting one of the best awareness blog post that I’ve seen addressing SPD.

    • I’m so glad to hear that you like the post. Thank you so much for sharing your “first judgment” story, it only proofs how important it is that we educate the people about autism and sensory processing disorder (SPD) since the poor kids (and adults) who suffer from it can’t do much about their situation and even less about their reaction.

      When we burn ourselves, we automatically yank our hand back, don’t we? We would also throw ourselves to the ground and scream in agony if we would feel excruciating pain, wouldn’t we? Yes. So compare that to the feelings of autistic kids that suffer from overstimulation of some sort and are in pain because of it. And just like I said in my last blog post, people never know the reasons behind the actions and reactions of other people and as such, don’t have any right to judge. That goes for everything – not just autism.

      • Too true. After years of SI and swimming he is now great with water. He was 2 at the time. He’s a big boy now and swims like a fish. Lol. The hubby still gets extremely pissed when he remembers that moment. I tell you, you never forget your first time. But you grow you move past it and keep moving forward. I pray a lot that’s how we got through.

    • This sounds interesting and I am sure it can help many understand the sometimes violent reaction from their children. Congratulations with your book, I will put the message out there.

  3. I’m a verbal autistic adult, with out children. The general problem of parents’ expectations of having a normal child, and to further normalize a child’s behaviour is the issue. Parents of autistic children may resort to normalizing therapies, and often see the successes of those therapies as a victory. I’m sure that my parents find it something of a victory that I can pass as neurotypical at a glance, and have been able to hold down some employment. Obviously parents of children on the spectrum are more understanding of the child when they act inappropriately, but I wonder how many parents are comfortable not hoping for neurotypical behaviour. I would say that the expectations are ubiquitous, and need to be challenged or accepted. But I don’t find it shocking that an adult who is not aware of the difference the child has would look at the parent as being at fault.

    I would like to wear a tshirt saying “I’m autistic… what’s your problem?” or “Fight Neurotypicality” though with a smile. I’m not angry, but I am NOT shocked at how parents normalize and have normalizing expectations. That’s what a parent is all about.

    BTW, your kids look cute. I have pictures of myself with those same, to me, autistic questioning look.

    • Thank you Jason. Your points are very insightful. …perhaps as to be expected given that you have autism yourself and already been through what many autistic kids are going through right now. I am very thankful for your input as I believe that we parents of autistic kids should listen to autistic adults the most as you know exactly what you are talking about. Sure, every individual with autism is different and autism comes out in many different ways but… there are still some common denominators and you have the insight that others can never achieve – as much as we try.

      I have never thought of the angle that you suggest; that we (parents of kids with ASD) are simply too expectant ourselves. Like you say, we do not have the same expectations towards our kids as maybe parents of neurotypical children but perhaps our expectations are still too high despite of that. I have to admit that I do indeed hope that my boys manage to learn the things that people are expected to learn, both through school and in society. …it’s just, you somehow always imagine that everyone want’s to be as normal as possible, including your children, or in other words (as normal sounds kind of negative in this context) that they would themselves want to fit in. Perhaps I’m wrong…?

      • Normal is not only a socially constructed fiction that is most convenient for market driven cultures of the post industrial revolution era, but it is unnatural and in the end bad for the species.

        I’m not normal. I have 4 degrees, a PhD, teach at a university and run a well funded research lab. I think lots of people would like to be non-normal like me. I also am a high school drop out who didn’t learn to write properly until his 30s, and never had a full time job until his 40s. Some people would not like to be that kind of non-normal.

        “Overall the average American, age 25 or older, made roughly $32,000 per year, does not have a college degree, has been, is, or will be married as well as divorced at least once during his or her lifetime, lives in his or her own home in a suburban setting, and holds a white-collar office job”

        Parents are deluding themselves if that is their ‘goal’ for their children.

        The notion “I just want my kids to be normal” seems to me to be a hope that children won’t be singled out, bullied or marginalized by their peers. Wishful thinking if you look at the statistics relating to bullying and abuse.

        Feminist thinking broke the mould in terms of what we thought was ‘normal’ in the workplace and the professions a century ago. The queer community has broken the mould in the civilized world for what is accepted as a meaningful relationship, etc. That means we don’t see the world from a black/white perspective that puts the white, protestant christian, university educated male as the model of what is good and normal. We see the world as a continuum, from left to right, male/female, the whole queer continuum from the hetro-normative male father of the family of the religious right to the same-sex two-spirited parents brining up children in a community context. And somewhere there is a trajectory/continuum for the autistic on an arc that intersects these continuum at some point.

        I am NOT an expert on autism. I have read much of the literature and thought about it a lot over the past years, and incorporated it with my lived experience. I look at autism as from the social disability model, meaning that we are disabled by a society that is not inclusive to people who are different, and expects medical model normalcy. I have no time for normal (as described above) nor the economic model is supports.

        I’m starting to work from the model that we have to engage children who are autistic in finding out the strategies to reduce their stress and discomfort, and frustrations with themselves and their environments. We’re trying to develop tools for sensory play to help autistics and people who are interested how and why to explore sensory information as a way to reduce stress in the autistic individual. In the end, autism IS a sensory integration disorder. I think that solving the problem with how we engage with and share sensory information will go a long way to finding our place on the continuum of human experience, which in the end is what we want for ourselves and others.

        All the people I know on the spectrum are particularly sensitive to disruption, and when they lack the freedom and autonomy to deal with disruption in the way they prefer, overloads are inevitable. And I feel that dealing with the issue of sensory integration is beyond all other things both the direction to allow an individual to engage with others most fully and the key to happiness.

        • Wow, you should write your own blog – seriously – I think a lot of people would like to read what you have to say. So many great points. Thank you.

          • Thanks. I’ve been blogging since around 1999 on various forums. I don’t have the attention span to maintain a sustained narrative though. It was your post that got me thinking this way. Thanks for it. And I taught a course in Iceland a decade back, and can actually pronounce your name :)

          • Thank you Jason, and I’m glad someone CAN pronounce my name haha :) I hope you will continue to read my posts and share your thoughts. They are, like 1funmum says below, mind-blowing. Well worth the read.

            xx Ragga

          • thanks Raga… what I’m really hoping to do is to help many adults with autism communicate more directly with families. I’m not a fan of one person being a voice for a community (as the Temple Grandin and JE Robinson seem to be). But as an academic and educator I am in a unique position that perhaps can help. I’ve started blogging again at http://lemmingworks.org though not just on autism. I’ve got your blog in my RSS feed, so I’ll be able to see what you’re up to. Thanks for the kind words.

  4. Is everyone else’s mind blown. That was some great thought. Me and the hubby will be talking for days. Thank you so much Jason for your comments. You have challenged us as parents caregivers teachers and general humans in all our thought process. I will be re-reading this for a week. Thanks again Ragga for writting one great blog it was an awesome topic. Bravo

  5. Excellent article. I sometimes will alert the staff of a restaurant or anyplace I go that my son is autistic – especially at a pool, so that if they need to tell him something, they can’t get mad if he doesn’t look at them. Most people have been extremely understanding and the others, well, that’s life.

    • Thank you :) …and I like your approach. I don’t think this should be anything to hide from others. Not that you have to walk up to every single person to let them know that your child has autism but… that’s not the same as notifying someone, who is likely to come in contact with your child in one way or the other, of the situation. And well, like you say, not everyone is going to be understanding but as I say in my post, I’m hoping that we as a community will make a difference with our openness that can only lead to increased autism awareness.

  6. Brilliant Blog Ragga and great conversatin below, thank you Jason for sharing your opinion, means alot. Will be sharing this indeed.

    Frábært Ragga, svo stollt af þér stúlka. Risa knús :*

  7. The sole reason such parents are condemned is because the other ‘Normals’ (their preferred term, as it speaks of their self-chosen state of moral perfection) believe that these ‘Traitors’ have broken ranks by Choosing to produce ‘Monsters’. By producing ‘defective’ children, such traitors have reduced the social rank of the Group; and the group rejects them in attempt to regain this vast ‘lossage’ of Power and Influence. Since Power is Life to Normals, all means, including Murder, as permissible so as to regain it – though if ‘getting away with murder’ can actually be accomplished, the resultant increase of Power causes that Normal or group of Normals to be regarded as Gods by their peers. (note: this is what Normals believe at the instinctual level. It is not the truth.)

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