Why It Appears I Let My Autistic Son Get His Own Way

As usual my son is the first to wake up. It feels like I have only just got to sleep. I probably have. As he makes his way downstairs he switches every light on he passes, takes a handful of teddies with him and finally settles down on his chair with his two iPads before screaming for the TV to go on. His presence defines the household. His demands can seem relentless and his screaming earth shattering.

To almost anyone who reads about him, comes into my home or works with him, the impression is the same: I let my autistic son get his own way.

What people see is just the tip of the iceberg and the reason I am writing this post is to show that what can seem on the surface one way isn’t always the case.

My son is ten, he has severe autism. He has no spoken language. He has epilepsy. He has a progressive genetic condition. Most importantly for this post he also has something known as violent and challenging behaviour.

Violent and challenging behaviour in children with additional needs like my son is much more common than people realise. The reason is simple: people don’t talk about it. There is a shame that comes with it, as well as judgement, embarrassment and fear.

My son used to injure me. He would kick, punch, pull my hair, bite, destroy things, scream, harm himself and throw anything he could get his hands on. He was frustrated, angry and violent, both to others and himself. I couldn’t ‘have words with him’ as his understanding was (and still is) that of a one year old. He had no concept of being grounded since he never left the house without me or went anywhere and taking things off him proved counterproductive as he made absolutely no connection to the removed item and his behaviour.

I needed to understand him better not punish him. I needed to realise what was driving his behaviours, even when he couldn’t tell me.

His behaviour was similar in school and home so this wasn’t simply a parenting issue or an education issue, this was a behaviour issue that needed addressed consistently and with a lot of patience.

So what changed?

Well firstly I realised my son wasn’t being controlling. He was anxious.

He wasn’t being hurtful or selfish when he injured other people or property, he was dealing with emotions he had no idea how to cope with.

He was confused, upset, had unmet sensory needs, frustrated at an inability to communicate and be understood and he showed this in the only way he knew how.

Behaviour is one of the biggest and most effective ways we all communicate.

He needed things to change and that change started with me. I put in place a very low arousal home life. To the outsider it may look just like my son gets his own way but realistically we are actually all getting our own way instead because the entire family is now safe, our property is safe, and most importantly my son is safe.

My son does get to wake when he wants, watch TV when he wants and choose his meals. He has access to his iPad from the moment he wakes and when he wants a bath I bath him.

People can think what they like but by responding to his natural body clock and going with the times that suit his natural rhythm he is calmer, happier and more settled.

By allowing him to watch the TV he wants I am actually calming him as he uses the schedule of a well know children’s channel to know when his school transport is due, when it is time for his bath and when mealtimes happen. This eases his anxiety and helps him make sense of his world.

By letting him choose his meals he feels much more in control and less anxious as he then knows not only what is coming but when it is likely to come too. Surprises make him anxious, and therefore more likely to be violent.

As for the iPad: well it turns out this is his very means of communication, his voice so to speak, and without this he has no means of showing me what he wants or even if he is unwell. To deny him that is taking away the very tool that allows him to be understood.

Then there’s the bath: this is fundamental to his mental well-being and triggers him to know it is time for winding down for bed. By making this a time for arguments or battles because the time wasn’t convenient for me was one of his biggest triggers for his behaviour. I was inadvertently saying to him that it was my way or no way, which made him feel invisible, out of control and helpless.

Low arousal for us is about letting my son know that he is understood, loved and accepted for who he is. This is his home and he needs that place of sanctuary and escape to be able to recuperate and relax in order to face the world. He needs to feel like his needs are met and that the atmosphere is one of calm and love not anger and frustration.

Many would say I am doing him an injustice by allowing him to ‘have his own way’. The argument is that in the ‘real world’ this is unrealistic. I understand that totally but my child’s ‘real world’ isn’t going to be about an employer, a spouse and following the rules of the road as a driver. My son will have carers, support workers and respite staff and it is vital that they are not attacked in the way I used to be.

Low arousal isn’t about letting your child dictate. It’s about understanding, listening, responding and meeting the needs of our most vulnerable children when they need it most. It’s about responding to the communication that the challenging behaviour and violence actually is and recognising that a child is struggling and needs help.

You might see a child appearing to get his own way. I see a child who is understood, calm and happy.

Until you have lived through what I have you may never understand. I don’t judge you for that, I just hope you never have to experience it.

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38 thoughts on “Why It Appears I Let My Autistic Son Get His Own Way

  1. I know lots of families living with children with Pathological Demand Avoidance for whom the low arousal approach is the only way to maintain a calm family life. As you say, it’s not about letting them have their way, it’s about understanding and meeting their needs x

    Liked by 3 people

  2. I often feel the same way – that it appears my son is dictating our lives and I am giving him his own way. And I am, you are right. I am for the same reasons though. When he was hitting me he was feeling the same way. Anxious. It is better for all of us for him to have the things he needs to feel secure. And I am all for it.

    Liked by 4 people

  3. I am incredibly grateful for this post. It is so hard to explain to others what it is like to be attacked by your child. And how wonderful it is to see them calm, happy and relaxed. If it means that othersjudge me to be spoiling him, then so be it. He deserves a happy childhood, as do his younger brothers.

    Liked by 4 people

  4. A great articles and well written and explained. Thank you for sharing why many families are learning to adopt the low-demand approach to support our autistic children who hit etc. Hopefully school staff will start to realise that this can also be an effective approach in a learning environment too.

    Liked by 1 person

  5. It’s so easy for others to judge what they don’t understand which can make it really isolating. You’ve expressed yourself so well, many parents will relate. Our household runs differently to most too, but it’s what works best for us. I’m so glad you guys have found that happy medium and that your son’s routine lessons his anxiety, which I know can be so beneficial for all. Thank you for sharing. x

    Liked by 1 person

  6. This reminds us of how to handle our “normal” children as well. I’ve learned in my almost 3 years as a mom that many time when my daughter “acts out”, it’s actually because of MY OWN behavior. I’m slowly learning how to “go with the flow” and do things similar to what you describe here. All the best to your family!

    Liked by 1 person

  7. I love this post. I had never heard of using television programming to guide a child’s schedule. Parents I have met have not talked about this either. I am curious as to how you learned to do this.

    Liked by 1 person

  8. Home is somewhere you’re supposed to feel safe. Every member of the family deserves that. “It’s not the real world” no but it doesn’t have to be. You can close your front door and be safe and happy. Our family works differently but it works. So does yours. So well done! We do homework in a pop up tent. I bet we have more fun than most other parents.
    X

    Liked by 1 person

  9. Thank you for putting into words something that every parent or carer of an autistic child will have experienced.
    I once read a book called ‘Making Peace with autism’ which helped me to understand that trying to change an autistic child is impossible, the only way is to have empathy with the child and do your best to meet his needs.
    Life can’t be a constant battle, life for parents of autistic children is very different and you must find your own peace with autism, whatever this may be. May you find your own peace.

    Liked by 1 person

  10. I loved reading this ! Well done for thinking and adapting to your son’s needs…. Know one knows how your living unless they are you. I work with these children and they all have their own needs 😍😍😍

    Liked by 1 person

  11. I work for an organisation that provides accommodation and support for adults many of whom live with Autism and blossom using your low arousal approach, we support many young adults who once the shackles of the education systems have been removed live calm, happy and productive lives.

    Liked by 1 person

  12. Hi Miriam, I am a parent of a disabled young person but I also work for a small charity that supports disabled children, young people and vulnerable adults to live and stay connected to their community. I specifically run a sitting & befriending service. We recruit and train sitters and one of the sessions we do is about challenging behaviour. Your post reflects so much of what we say to our sitters and I wondered if it would be ok to include a copy of it in the training handbook we give out at the end of the training? We say this but it would be so powerful to have a piece written by a parent. Thanks Sue (www.ruils.co.uk)

    Liked by 1 person

    • Absolutely. Please use with my full consent. I am delighted to hear such a service exists and that people are being trained to understand and meet the needs of children like my son. Thank you for doing such a wonderful job.
      Miriam

      Like

  13. Wow.
    That is the most articulate, understated and powerful explanation I think I have seen.
    It has been my pleasure to support people with similar presentations for nearly thirty years now.
    As I read your words I am nodding along.
    Thank you.
    Good luck to you and your son.
    Barry

    Liked by 1 person

  14. Dear Miriam
    I’m the parent of two young men with autism, one of whom presents as PDA – and am oft criticised by family. Hey Ho. I picked up your article on Twitter and included it in a weekly newsletter of my own last weekend ( http://www.sendspeak.org/blog ). It was by far THE most popular item in terms of ‘unique clicks’. Thank You on behalf of my self and others.
    Here is an extract from another parent commenting on your article within SENDspeak: “…I can relate to this soooo much, we are made to feel like this because it is not a case of giving in to our children, it is finding the way that works for them to be able to cope, a big learning curve for all of us be it parents or carers but if it works in our hearts we know our children.” Thank you again.

    Like

  15. Miriam,
    I am a newer mom, my daughter is 21 months old and was born with a long list of diagnosis – the top being Trisomy 21 and Congenital heart disease. Over the last 1.5 years, she has had several surgeries (one being open heart at twelve weeks old) and her list of diagnosis’s seems to have become never-ending, with the most recent being “suspected autism” . As I was reading your post, it reminded me much of previous special needs mom posts I’ve wrote on the inability for others to fully understand what our lives entail – behind closed doors. I think you did an absolutely amazing job with not only explaining but providing a true insight to a life so many misunderstand. My prayers for health, comfort and strength are with you and your family.
    Thank you for sharing.

    Liked by 1 person

  16. My husband has ADHD (I suspect dyspraxia, sensory processing issues and ASD also). For him, every time he steps out of his own front door he is having to fit into a work that doesn’t quite accommodate him. It’s like being left handed in a right handed world. I think everyone should have a space where they can be themselves without fear of punishment or pisapproval – we all need some where it is safe to be who we are! Consequently I try to make our home as adhd friendly as I can… we’ve removed cupboard doors so he can see where things are stored, I pick things up endlessly after they have been dropped on the floor or lobbed hurriedly in the direction of where they belong. I complete the half finished washing up countless times, find glasses, keys, medications, books, bags, clothes… I adjust laundry and cleaning routines until he is out of the house… some people think I am being ‘soft’ and should challenge his behaviour more, which they see as lazy or entitled, and me as a meek submissive servant-wife. But I think I was made this patient for a reason, and everyone deserves to be able to relax when they get home. And, a relaxed and happy husband goes a long way towards my relaxation too, because he is very expressive of his frustrations! I am learning to express my needs too, and often this feels like a work in progress, but I totally get where you’re coming from. Your son loves you more than you know, and his gratefulness for you supporting and allowing him to be who he is will be vast. Even when we’re not sure whether he experiences things like being grateful, I believe our spirits are all whole, and one day, outside of earthly limitations he and you will be able to clearly articulate how much you love him and how much he loves and values you.
    From one patient care-giver to another, I see you, and want to let you know you are awesome and so very valued xx

    Liked by 1 person

  17. Lovely post, we are very much low demand household here due to PDA.

    ” His behaviour was similar in school and home so this wasn’t simply a parenting issue or an education issue, this was a behaviour issue that needed addressed consistently and with a lot of patience.”

    However I would have to strongly disagree that having challenging behaviour ‘only’ at home means that there is a parenting issue. This is a myth pedalled vigorously by those in authority (even those who claim to understand masking) as a stick to beat parents with in order to prevent access to much needed services and can have severe and terrible consequences for the families involved.

    Liked by 1 person

  18. Parenting autism is the reverse of everything I ever thought or expected about parenting. If you expect a gold fish to climb a tree, it will always fail.
    I found that my issues as a parent arose from expectation. And it got more frustrating as my some got older. We expect certain milestones, as that is what every other kid has..not with autism. As you said, your son has the understanding of a one year old. Would you scold a one year old for being non compliant? No, because you do not expect a baby to understand. But outsiders see a 10yo, so they expect the behaviours of a 10yo.
    You have found your groove. I totally get it. It make perfect sense. I am sure it is a struggle to keep your own focus sometimes, but that’s why there is respite.😊
    My son taught me more about the world and myself than I ever thought existed.
    Autism, a curse or a blessing. ?? 💙

    Liked by 1 person

  19. This is exactly how we live. As my son gets bigger, now he is 19, this is the only safe approach. Educators are finally beginning to listen to me. After 17 years of battle..who cares if he must watch Maury at 5:00 while I cook dinner with his 2 ipads and 3 old cell phones???

    Liked by 1 person

  20. After my husband read your post he told me I could have written the exact words. The only difference being our son is soon to be 28. Our oldest son will be his guardian when we’re both gone.

    Your statement “My son will have carers, support workers and respite staff and it is vital that they are not attacked in the way I used to be.”, is the process we have committed the rest of our lives to preparing everyone for. I too have been in that place and not only is it all you mentioned, I had ‘neighbors ‘ that wanted he and I run out of our neighborhood. My husband and I retired early and are now full time RVers, and the amazing silver lining is our son is happily emerging.

    I couldn’t have said all you said better myself. Your family is blessed to have you🥰

    Liked by 1 person

  21. The phrase ‘getting his own way’, to me implies manipulation and nothing in this suggests that this is in the childs mind.
    As far as I can see, none of the child’s acts now are dangerous to him or others. I’m sure if he was trying to do something dangerous that the reactions of his family are very different!
    I treat my daughter with respect, she helps choose meal options, when actions that can be flexible are done – I see nothing different here! It’s a bath!! Which he wants to have!! In later years that can be a struggle…….
    Very powerful piece of writing

    Liked by 1 person

  22. I’m with you here. I have my daughter 8 who is not yet diagnosed. She has speech but lacks understanding in so many ways. I feel that everyone who sees me give in or placate her thinks I’m curling bad behaviour.
    My son is now 18 and he doesn’t have speech and has PDA his autism is severe. He still smashes up things out of frustration and creates an unsafe environment for our three girls. I get it. I understand it’s just a shame other people cannot see how much patience and understanding it actually takes to achieve a level of calm at home and letting them have some autonomy is imperative to their happiness. No matter how small the demands are.
    Good on you too for standing your ground.

    Liked by 1 person

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