“My Autistic Child Makes Me Miserable” – The Google Search Results Series – Part 1
I’ve had it in mind to write articles based on Google search results for a while, and when I put in the word “autism” today, it came up with the usual, “Can it be cured?” “Is it genetic?” “Can they ever be normal?” Those answers have been covered so much by other autistic advocates, that I figured I can give them a skip. I wanted to dive deeper.
Well, deeper I went. I decided to search “my autistic child” instead. Yikes!! I mean, damn! The first result that came up was “my autistic child makes me miserable”. OK. I got this. I can write around this because it’s necessary and needed.
So, if you’re the parent who searched this, and my article popped up: Hello. I don’t hate you. YOU are actually the parent I’m trying to reach, and I’m not going to chew you out about your choice of search queries.
You’re frustrated, you’re scared, you’re angry, you’re sleep-deprived, you’re hurting, and I do understand. Maybe I don’t understand it from your perspective, but I do know what it’s like to go through all of these emotions because I’m the person on the other side of it; the autistic side.
I’m an adult autistic person. I’m your traumatized child all grown up with complex PTSD and OCD, and I want to help you both stop suffering so much.
So, Why Does Your Autistic Child Make You Miserable?
You’re miserable because you and your autistic child speak two different neurological languages, and it’s causing chronic and life-altering misunderstandings between you both on a daily, if not hourly basis. You’re not communicating, you’re clashing, and it’s hurting you both.
Misery Can Be Relieved Through Understanding
He or she is going to go on and on about how challenging things will be, how your child will never have a “normal” life, how your own life is about to be turned upside down, and how you can never die because your child will never have any type of independence.
Having a medical professional say things like this to you when your child is first diagnosed sets you up with the expectation of being miserable, and that can breed resentment that can then be easily picked up on by your child because us autistic folks are very attuned to change in a person’s energy toward us, even if you never say a word.
This misery can be relieved through understanding, though. There are books I highly recommend, and I will list them down below. I also advise following neurodivergent creators on Facebook, Instagram, and TikTok (and I will include a few links to those creators, as well).
Understanding the way an autistic person’s brain works and the intentions and motivations behind our behavior is your first step to learning our language, which, in turn, can greatly improve your communication with your child.
- Being Literal
Autistic people are literal. It’s just the way our brains are wired. It can be really frustrating for a neurotypical person, who is used to using idioms, subtext, and roundabout ways of conveying information to get the true meaning of a message across to an autistic person, but it is also just as frustrating for us when you don’t speak plainly.
Also, autistic literalness is not an attempt to be a smart-ass. We truly don’t understand you. When you want an autistic person to do something, ask directly, no hints, no idioms, no subtext, just clear, concise language.
For example, “The garbage needs to be taken out” is not the same thing as “Take the garbage out.” It may sound like it to you, but one doesn’t make sense to us as a request because it’s not phrased as one, whereas the other does because it’s direct.
Always be direct.
- Sensory Overload
The world as it is, with its noise and lights and smells and textures, is an assault on our senses on a daily basis. These things make us miserable all day long, and, if we’re not able to regulate our sensory input, it can cause us to make everyone around us miserable.
That’s not our intent, but without the ability to regulate our emotions and the tools necessary to do so, going to school, a family member’s house, or to the grocery store can be as horrifying and traumatizing for us as swimming with sharks would be for you.
That’s why noise-canceling headphones, sensory aids, and compassion around the onslaught we face every day is critical to our (and your) improved mental stability.
Remember, sensory overload isn’t something we can turn off, and it’s not something we can help, but it is something we can regulate.
- Food Aversions
I hear the phrase “picky eater” used in conjunction with autistic sensory aversions a lot, and I don’t like it. Being a picky eater implies choice, maybe even snobbishness, and it sends the wrong message.
A food aversion is just that, an aversion. It’s a sensory assault. It’s not an attempt to be difficult or get our own way.
For example, if your autistic child pushes peas violently off his plate every time you serve them, he is communicating with you that he cannot stand them the way you would not be able to stand eating a live, slimy, wriggling insect. He is trying to stop the sensory assault that is driving his body into fight or flight.
When an autistic person is prevented from stimming, it can cause shutdowns and meltdowns, which are often misinterpreted as “willful” or “bad” behavior.
If your child is not allowed to stim to self-regulate, she will be absolutely miserable and, because she will be in a near-constant state of fight-or-flight, everyone around her will be, too, most likely because they are completely misinterpreting her intentions and needs.
Unless a stim is harmful, never stop an autistic person from doing it.
- Hitting/Destructive Behaviors
Hitting, biting, hair pulling, screaming, and other destructive behaviors can make the parents of an autistic child miserable. However, this is because the child is miserable.
If any child has come to the point where they are regularly performing these behaviors, they are in deep, deep distress. They’ve tried every other way they know how to communicate a need or a feeling, and it has gone entirely unheeded.
They are at their breaking point, and their overloaded brains, which are now locked into a state of fight-or-flight, can no longer regulate their emotions or movements.
Again, this behavior is not mean, manipulative, evil, or any other of the words that may be used to describe it; these are acts of sheer desperation, frustration, and terror.
This is why it’s so vitally important to understand how the autistic brain works by reading and watching content created by autistic creators, so you, as a parent, can intervene with the right skillset and tools before this type of destructive behavior becomes a pattern.
- Asking Questions
Your autistic child is going to ask you thousands of questions, and it’s never backtalk. Autistic people use questions for one sole purpose, and that’s to get answers.
We don’t engage in the social gymnastics that neurotypical society tends to, and when we are treated like that’s our intention when we are simply trying to understand how to navigate our world, it can cause serious and irreparable trauma.
Answer every question with love and patience, and understand that when you do, you’re bringing your autistic child one step closer to a state of equilibrium.
- Needing Familiarity and Sameness
Autistic people live in a world not designed for us, which makes everything uncertain, even in the best of times. Needing familiarity, sameness, and routine, is a hallmark of the autistic brain, but it is sometimes mistaken for inflexibility or not wanting to do or try something new. This is not the case.
The familiarity of eating the same foods, wearing the same clothes, watching the same TV shows, etc., offers us soothing predictability when everything else seems out of our control.
With routines we’ve memorized, we know what’s expected of us, we know what to do, and we know the outcome will be the same every single time, and that’s blissful when being autistic in a neurotypical world is like looking both ways before crossing the street and being hit by a plane.
- Being Clumsy
If you’re unfamiliar with the autistic tendency to have poor proprioception, you may mistakenly believe your autistic child knocked over your grandmother’s priceless vase in a purposeful attempt to make your life miserable, and you may punish him or her accordingly, which will result in lasting trauma.
Autistic people can be notoriously clumsy. I know I was and still am. Proprioception is the sense that tells you where your body is in relation to other objects, and many autistic people struggle with this sense. This can cause us to knock things over, run into things, cut or burn ourselves while cooking, and be absolutely terrible at sports, among other things.
Poor proprioception is not a purposeful act of destruction, and it should never be treated as such. If you have an autistic child (or any child, really) in the house, put the valuables and breakables away. Your child’s mental health will be much better for it.
- Learning Challenges
Learning challenges are very common in autistic people. Sometimes, this is due to a comorbid intellectual disability. However, I also believe these learning challenges can be the result of neurotypical people not teaching autistic people in the way we learn.
Thankfully, there are ways that you can help your autistic child learn, but you first must understand the way their brain works.
Living as an autistic person in a neurotypical world is anxiety-provoking, full stop. Literally, no other trauma has to happen to the autistic person for them to develop anxiety and/or PTSD.
That’s what it’s like for us every day. Miserable? I promise you we know this feeling very intimately, and we don’t want to suffer any more than you do.
Resources to Help You Better Understand Your Autistic Child
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So i was actually looking online for answers to questions i had about my sons autism and when i typed in the search bar “my autistic child” the one you spoke of in the beginning it gave me the same search result. i decided to look and see what would pop up if i used that and i found you. im glad i did. Being and autistic adult means you may understand more of whats going on in his head at this stage in life than i do. i would really like to talk to you if you have time to email me so i can ask you some questions. we need help. i love my son but somethings going n with him that i just dont understand.
and just in case i wasnt clear enough with what i was saying. I NEED your help. no one else seems to know what to do about whats going on with him. please contact me if you can.
I sent you an email.
This didn’t touch any base on what the search actually said.. my autistic child 9.. drives me crazy and all I can do is pray that he’ll be able to take care of himself soon because I can’t do this forever.. I want a real life.. I cry daily.. even the thought of my child and what we’ve been through and not seeing the light at the end of the tunnel makes me cry more. All he talks about is the latest movie or the latest toy or game.. DAILY ALLL DAY!!!!! And I pretend I’m listening with a response of “Oh wow”really.. good.. and other days I yell that I am tired of hearing it. We talk but the conversation always goes back to the latest 202 movie etc.. I don’t even know this child.. so speak on being miserable not OCD and this other crap you speak of.. remedial
I sent you an email. If I can help, I’d like to.
My 3 year old son is doing a lot of biting/destructive behaviors. Can you help me with some resources?
I haven’t read this book, but I’ve heard it has helped other parents: https://amzn.to/3FRW4tu
This is all very nice but what about the autistic child that doesn’t sleep,is non-verbal, is aggressive and harms himself and others. No services are available as the waitlist is long. No one ever talks about families likes ours. They talk about the autistics that can self-identify. My child will be dependent on me for the rest of our lives
I tried therapy for myself. Tried a few different ones. All of them kept saying take a break. Laughable. Because when I come home
From the break, it’s the same thing.
Thank you for your insightful comment, Anne. You’re correct in that I do write mostly for parents of children with lower support needs, but I do want to be a resource for families like yours, as well, but since it’s not my arena, it will require more research than I can do or offer in one comment. I will, however, direct you to this book, which parents have said has been very helpful for their child: https://amzn.to/3FRW4tu.
I have a 3 year old that we doesn’t have te maje diagnostic yet. I need some help. Can I call you?
I offer one-on-one consultations over email (direct message). You can follow the link to that page here: https://www.thearticulateautistic.com/translate-autistic-behavior/
Hi, my daughter is now 6 and is non-verbal. She has difficulty in making eye contact and concentrating. It is so difficult to imagine she will be able to write or talk or even tried to contribute to community like you do. Do you mind if I asked you what is your diagnosis when you were child? And what is therapy that you take?
Hello. I was actually diagnosed at 35, but as a child, I was diagnosed with ADHD. I don’t have any specific therapy for being autistic, but I do have a therapist for my OCD and complex PTSD. If you’d like, I can offer you a private consultation where we can speak further. You can find the link to my consultation page here: https://www.thearticulateautistic.com/translate-autistic-behavior/
Please email me. I need some guidance with my two year old after reading the part about why he’s hitting and biting meaning he’s miserable just broke me. How can I fix it? How can I do better to make him happier??
Hi, Ashley. I sent you an email.
My son 14, ASD and severe ADHD takes years long “turns” bullying myself, his brother and my husband. No amount of therapy will get him to stop. For the last couple of year a he’s turned his bullying onto me. He picks on me and thinks is funny and a game. He can be very cruel. I’m ADHD myself so I have a hard time dealing with it. The name calling, tone and inflections, he’s nasty. But when I lash out he gets offended or just laughs it off. He says he was trying to be mean that he was just playing and that he didn’t want to hurt my feelings. Everyday it’s the same. Before me it was my other son , 16, that he bullied for years. His personality completely changed because of it. He lost confidence in himself and became introverted. He’s extremely shy and quiet now. He was the complete opposite and it hurts to know that his own brother caused that. He himself has ADHD and has been in therapy for years as well. I just want him to stop. Outside of the home he is the sweetest boy, very attentive and sympathetic especially to those younger than him. Things have gotten worse since my mom suddenly passed away recently. He hasn’t wanted to accept it or even talk about it. He’d rather pretend that nothing has happened. I on the other hand am traumatized and am having a hard time dealing with it on top of what ye puts me through. When he does finally realize that he has in fact hurt me, he cries and apologizes and promises to never do it again but it’s a vicious cycle.
Marina, I’m really sorry you’re dealing with this. Could it be that, in addition to ASD and ADHD, he may also have a personality disorder? His behavior sounds purposeful, not accidental, especially since he behaves so differently outside the home. That’s a red flag to me that there may be another mental health issue going on. Have you had him evaluated for that?
How dare you offer advice to these desperate parents this way, as if you have had the experience of being an autistic child. Diagnosed at 35!! So, then you did not have the sort of extremely disturbing behavior and global developmental delays that characterize children diagnosed early in their lives! Severely autistic children are very often non-verbal, they are agressive, violent, prone to fecal smearing, doubly incontinent, and evidence zero capacity for empathy. These parents are desperate and if you don’t understand why then I would suggest that you do manifest one defining trait of autism, and that is absence of empathy. But Autistics don’t have a monopoly on lack of empathy. No, they share this gem of a quality with both psychopaths and sociopaths, and perhaps that is the source of your tone deaf worthless ‘advice’. You have no qualifications to speak on this subject, and guilt tripping these very unfortunate parents with the suggestion that the source of their misery is their own miserable parenting.
These parents have been sentenced to a life worse than death. They will be parenting children whose autism manifests as a hybrid mental disease of sociopathy and profound mental retardation.
Have the decency to feel ashamed of yourself
I’ll never be ashamed of myself for trying to help people, Jenny. It’s my life’s purpose and work. If you believe that my writing really indicates that I have no empathy when the exact opposite is true, there’s nothing I can do to convince you otherwise. However, I will clear up one point: I never said anything about suffering being caused by bad parenting. I said that neurotypical parents often don’t understand their autistic children because their brains work differently. I want to offer a translation for that disconnect. That does not mean I can help everyone or that my words will magically stop all the pain. It’s simply an explanation and a different way of looking at things. I’m truly sorry you and your family are struggling in this way. There are other autistic creators out there who may be able to help you better than I, and there are also some incredible books written by other autistic adults. I wish you and your family nothing but the best outcome possible in your situation.
Also, look up Autism Inclusivity on Facebook. They have a great group of autistic people (very blunt but effective) who talk, in-depth, about the exact topics you’re bringing up.
Honestly I was looking for “my autistic child” is terrified of other kids when your blog post came up.
I have honestly felt many times before my child makes my life miserable, because I spend my 24/7 with her for her and I still dont feel I can get understand her and even so I’m the one who knows her the most. I get no time for myself or my hobbies .
My child has a lot of behaviors that need to stop like putting everything in her mouse and crying every time she sees or hears a child. Because children are everywhere!!! Where the heck am I gonna go out with her if I have to avoid kids??? I feel so frustrated. She is nonverbal to make it harder and I love her so much!
All I want is for both to be happy but I’m lost in translation. I decided to study to become an aba therapist … that is my last hope. Maybe through becoming one I’ll learn enough to help her.
I have accepted her condition long ago (she is 4 was diagnose at 20 months) and honestly she is an amazing little girl! Obedient and cooperative, sweet and playful… Is just that the bad is heavy on both and I feel despair when I m not good enough to help her.
Oh, God. My heart just clenched. Please, please, please don’t become an ABA therapist! ABA is incredibly abusive and toxic and it only aims to try to teach autistic children to behave more like neurotypical children. I will do a private consultation with you for free, but please don’t do that.
I agree with Jenny. when I saw what u the OP said about if a kid is hitting biting and fussing then we the parents are the ones at fault when our kids are more commonly non-verbal and frustrated and angry I knew immediately u were backwards and MUST be on the spectrum to say something stupid and condescending such as that. We are looking for help and advice not a blame exercise. My 6 yr old son is nonverbal and autistic so he can’t be listened to and reasoned with and i’ll be damned if I let you sit here and make us out to be some kind of criminals because we are doing the very best we can raising our difficult yet lovable children. Save the judgment for your stuffed animals and stop making posts like this, your not helping anyone with this
Brenda, I never blamed the parents for their child’s misery. I said the child is miserable as a result of being misunderstood and frustrated. That doesn’t mean that you, as the parent, are purposefully misunderstanding them.
One does not need to be on the spectrum to make a stupid and condescending remark, Brenda.
Haha! Thanks for the support. 😉
You are responding with emotion, projecting yourself onto the author of this article, and eschewing all sense of reading comprehension. The author did not make you out to be criminals, but clearly you feel as if you are one, since you brought up that non-sequitur. Get help and take your emotional outbursts to another venue; they are not welcome here.
I agree with Jenny. when I saw what u the OP said about if a kid is hitting biting and fussing then we the parents are the ones at fault when our kids are more commonly non-verbal and frustrated and angry I knew immediately u were backwards and MUST be on the spectrum to say something stupid and condescending such as that. We are looking for help and advice not a blame exercise. My 6 yr old son is nonverbal and autistic so he can’t be listened to and reasoned with and i’ll be damned if I let you sit here and make us out to be some kind of criminals because we are doing the very best we can raising our difficult yet lovable children. Save the judgment for your stuffed animals and stop making posts like this, your not helping anyone with this!!
I have to say that it has been very helpful to receive your explanations as to how autistic people view the world and try to cope. My son was diagnosed withAspergers in his 30s ,(he is now nearly 50 )although I knew instinctively that there was a problem with him the day he was born. I got no help and we struggled with his education, our home life and I can honestly say our life has been completely ruined by trying to cope with our controlling and disrespectful son. My husband is 88 now and feels that all our lives( his, mine, my daughters and my sons) have been destroyed by the shear lack of help and guidance we have had despite all our pleas for someone to tell us what to do. Our day to day existence consists of trying to help our son to cope with his job,paying his bills, supporting him mentally and physically, transporting him around because he doesn’t drive ( he is very obese, diabetic and highly stressed)
What I need to know is how and where do we find time to have a life ourselves because everything revolves around him. He controls us and verbally abuses us daily and doesn’t seem to understand that we are old now and need looking after ourselves!
I read the entire article. It would be very helpful to me if you would list the 10 ways an autistic person’s brain works in a printable form that I can refer to regularly and easily.
Ah, there are so many more than 10 ways. lol! I can recommend some other articles I’ve written, though: https://www.thearticulateautistic.com/15-things-that-bother-your-autistic-loved-one-that-you-may-not-even-notice/: https://www.thearticulateautistic.com/8-things-autistic-people-do-that-youre-misreading-as-a-neurotypical/: https://www.calliopementalhealth.com/blog/misunderstood-autistic-traits.html.