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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

How did you come a better parent to an ASD child?

50 replies

Cookiecrumblepie · 09/07/2024 19:18

I have a suspected ASD child (waiting for assessment atm). Son is full of rage, answers back all the time, rude, challenging, throws stuff at me etc. I find myself getting angry even though I know his actions aren’t intentional. If you have a neurodiverse or challenging child (age 4-6) what things did you do to become a better parent?

I am also seeking professional help but thought I would ask here.

AIBU to ask for things you’ve done to be a better parent to a neurodiverse child?

OP posts:
Whatafustercluck · 09/07/2024 21:24

Research as much as you can to understand as much as possible - develop an understanding of your child's major triggers.

Try different strategies, as suggested by other SEN parents, and don't listen to those who tell you to insist on rewards and consequences. They don't work for SEN kids, so don't feel guilty about parenting your child differently to the approaches recommended by neurotypical parenting sources. This will include picking your battles, not punishing in the heat of the moment, not reacting if they tell you to shut the fuck up. Keep things neutral as much as possible - but forgive yourself if/ when you react less than perfectly.

Read The Explosive Child. If your child has sensory processing difficulties, also read Raising a Sensory Smart Child.

Understand that the bad behaviour is a result of anxiety, not naughtiness. Discover what causes the anxiety and help your child to improve their emotional literacy. Often they can't link how their body feels as a result of different emotions and how that affects their behaviour. I completely agree that keeping anxiety at the low end of the curve and therefore keeping them regulated is key.

Most importantly, get to really know and understand your child and their specific difficulties. I know this sounds really obvious, but I felt like I didn't really know my dd for a few years. Only now she's 7 can I say I have finally developed a deep and instinctive understanding of her, her likely reactions in different situations, and an emotional connection with her. She sees the lengths I go to in order to help and support her - from battling for EHCPs to buying her soft touch socks - and our relationship is now strong and loving. It wasn't always that way. I'm her safe place. Be your child's safe place, and remind yourself of that when you're getting physically or verbally assaulted. It's hard. And please try to prioritise some time and space for yourself so you don't become resentful.

daffodilandtulip · 09/07/2024 21:35

Realising that they didn't really hate me for what they were currently screaming about hating me for, they were overloaded from something else. It took a lot of the internal stress away.

FumingTRex · 09/07/2024 21:40

Honestly the best thing I did was go on antidepressants. Things were really bad. I only took them for 6 months but it helped break the cycle of him triggering me and me triggering him back. If you are being physically hurt every day it severely affects your own mental health and you cannot be the parent you need to be (or at least I couldn’t)

Things are good now!

Maryamlouise · 09/07/2024 21:46

Still figuring it out and hoping to do a parenting course. I just read Low Demand Parenting and found it really useful to explain how to do that effectively

Montydone · 09/07/2024 21:59

I also have an autistic 5 year old who struggles with regulating emotions and reading these responses is so helpful, reassuring and hopeful. Thanks everyone.

coffeebaconandrepeat · 09/07/2024 22:08

daffodilandtulip · 09/07/2024 21:35

Realising that they didn't really hate me for what they were currently screaming about hating me for, they were overloaded from something else. It took a lot of the internal stress away.

Absolutely this. Realising it is not personal and they are showing you that they're overwhelmed/dysregulated/not coping.

Cracking out the calming strategies. Realising that some things will take longer.

Changing your perspective to follow their interests to engage them.

Giving up on NT expectations - this is hard and you need to remind yourself every time you're stuck somewhere chugging Prosecco with groups of parents talking about how hard it is to fit their dc's 15 extra curriculars in.

Babygrootsdad · 09/07/2024 22:16

Accept that autism is genetic and you and/or their other parent are probably autistic too. Accept that this will probably cause conflict and tension within the household.

Lower your expectations.

Make sure your home is your child's safe space. Protect that at all costs.

Tell your child that you love them and are proud of them everyday.

Encourage them to learn about autism themselves once they are able. Encourage them to be able to advocate for themselves when they are able. I'm so proud of my 11YO being able to tell people in authority 'I need this'.

Ignore MN advice on screen time.

Don't be afraid of nudging your child out of their comfort zone sometimes. My DC can really surprise me with what he is capable of doing when given a push.

BertieBotts · 09/07/2024 22:21

Learning about the nervous system - dysregulation and polyvagal theory.

Learning about sensory integration tools to help with above.

Getting my own ADHD identified and treated.

I can't really explain it all in a single comment but essentially the nervous system is the whole key to everything IME - they will slide between different states. We all do as humans but children aren't yet good at self-regulation, so they are dysregulated a lot, like toddlers having tantrums or a 5yo saying "I am going to put you in the bin" or ripping up their drawing because it's not good enough or a 9yo slamming doors and saying "I hate you". Whining, wheedling, flopping and sighing and "I can't do it" and "play with me" and "I'm boooored". Basically any of this silly/annoying behaviour where they really know better but they are doing it because they are in a foul mood and have no better coping skills yet. It's normal. Adults get dysregulated too - being snappy, irritable, etc but maybe in more subtle ways like finding it difficult to concentrate or feeling restless. Ideally, we notice when this is happening and take steps to self-regulate - we might do this consciously e.g. go for a walk, have a smoke, cup of coffee, rant to a friend etc, or we might not really think about it but just recognise that we feel better for having a chat etc.

ND children spend much more time in a dysregulated state, they find it much harder to self-regulate, and the signs they are dysregulated might be different, for example, an ADHD child might go into a very "hyper" or silly, almost manic-seeming mood where they are like a whirlwind shrieking and making a mess, annoying people on purpose, etc. I am just starting really learning about autism but know less about it, but you might see more stimming or stress behaviours when an autistic child is dysregulated or you might find that they are less able to respond to social cues or might even seem to have less language. I think this explains a lot of the confusion that many people have around ND children because we see them doing something one time or sometimes (when they are regulated) and then wonder why they can't do that at another time (when they are dysregulated). It is even sometimes used as kind of "proof" that they "could do it if they wanted to" which - once you understand regulation/dysregulation, it all makes a lot more sense and you can see that they genuinely can't.

Regulated does not necessarily mean happy or calm. You can be angry and regulated - think about a politician, championing a worthy cause, or the kind of teacher that everyone respects and nobody wants to cross, but who is meticulously fair. You can be active and regulated - think about someone playing sport, or acting in a play. Regulation is about being in control of your body and your reactions, whereas dysregulation is not really being in control - it might be too much energy for the situation so somebody is chaotic and uncontrolled, or too little energy for the situation e.g. a child struggling to focus in class and falling asleep.

Push dysregulation too far and you'll get fight or flight, which is what meltdowns are. We associate fight or flight with terrifying, life-threatening situations because for most NT adults that's when we experience it. But ND children may well be pushed into this state much more often. That's why a meltdown is not a tantrum, it is not a behaviour, it is not manipulative/to get what they want. It's where their nervous system is so overloaded that it has essentially triggered an ancient survival mechanism which makes them react as though their life is in danger.

The sensory piece of the puzzle is key because while sensory is not the whole picture, it can be a huge part of the picture and is an often overlooked one. Any sensations they are more sensitive to will build up and add to dysregulation, so learning their sensory sensitivities and building in strategies to reduce the impact of these can help. And then it also helps because sensory input, particularly movement for ADHD children, or any sensory input they find regulating for autistic children, can help them self-regulate and come back to a more controlled baseline. In fact, stimming is often a form of sensory self-regulation, so be careful if you're ever looking to discourage any type of stimming (even one which is harmful) - you should be aware that by doing so you're removing a self-regulatory tool so you should be looking to either replace it or perhaps reduce overall stress, rather than address the stress behaviour.

I think Stuart Shanker's Self-Reg is probably the most comprehensive source of info on this but he is very rambly. If you want a quicker getting started guide I prefer Conscious Discipline or The OT Butterfly.

TheLurpackYears · 09/07/2024 22:30

I took the pressure off/ went low demand wherever possible and used that energy to decide what really did matter- brushing teeth and keeping up liquid consumption as basics. There have been some extended periods out of main stream education while she rested and recovered.
It probably looks like an utter shit show to an outsider, imagine a 10 year old who doesn't put herself to bed untill midnight....but as family we are more peaceful and more enriching things can get done, we cam even leave the house! There are very few violent meltdowns, a range of foods get eaten- although not a sit down meals where we all have the same thing.
It's not what family life is meant to look like, but so what!

TheHateIsNotGood · 09/07/2024 22:36

DS is now 22 and about to start on a well-suited, well-earned Apprenticehip obviously with me hovering in the background supporting him to give him the best damdest shot at making a success of it.

Don't overthink anything or follow any advice as if it's a catchall for parenting ND dc as if they're homogeneous group. By being ND of any description/label they are clearly not, but individual individuals - many of whom in years gone by would have had a place in common society but society now is too rigid to accommodate much ND; preferring to address diversity in more obvious, simply understood ways.

DS still infuriates me but I I don't let it get to me and focus on the good stuff he does. He does want to be helpful it's just finding the right buttons to push; in the correct order of course.

BestZebbie · 09/07/2024 22:38

As well as the books above, read Naomi Fisher "Changing Our Minds" about education and how one-size doesn't always fit all.

Schedule in a lot more no-demand days than you think they need - they will need them. To start with while they are showing frequent distress and are so young, really make it no demand - no need to go anywhere or do any enforced activities chosen by others, don't have to dress or sit at the table to eat etc if they'd prefer not to - you can suggest/nudge these things but don't fight, sulk or argue if they opt out. Safety and hygiene stay non-negotiable. If you start seeing less distressed/overwhelmed/dysregulated behaviour each week, you can have slightly more demands on a no demand day, but not instantly back "to normal" (you may never get to "normal" as shown by NT kids in Instagram).

Understand that if they are horrifically upset by something minor that is because they don't think it is minor, they think it is horrifically upsetting, so try to meet them there and establish what they think the issue is rather than minimise or distract (it will help in the long run).

Don't be authoritarian, try to treat them as an equal wherever possible. (obviously they are very uneducated and can't drive the car, but if they feel you are recognising and acting as if you understand that they are a person who wants autonomy for the most part, then they will hopefully also see that you are still being reasonable and trustworthy when you make rules based on age/physical ability). Be aware that a flat but firm voice can be interpreted as an angry, aggressive, threatening one, or as shouting.

Cowbag77 · 10/07/2024 03:29

Corksoles · 09/07/2024 19:24

NB you have to develop a sixth sense for when they're overwhelmed and kicking out because they cannot cope, and when you need to make clear that that type of response isn't OK. It's much easier to do that with the sort of framework in your head that Ross Greene sets up. I'm not advocating allowing your kids to be rude or destructive - but you can't effectively stop that behaviour without equipping you and eventually your child with tools to stop getting to that point.

it helped when I started to guess hunger or thirst or pain that they could not recognise/communicate as a reason for their lack of composure.

Mountainormolehills · 10/07/2024 03:39

Autism training really helped me understand my child, and support him better, as well as help him transition through situations like learning to problem solve. His sibling is also ND and the training has helped me to understand how his brain works in a different way again. It’s been more difficult as my ex treats them both differently, favouring the eldest, but I try to coax them both into personal growth in their own ways and by respecting their individual needs and boundaries.

Crazycatlady79 · 10/07/2024 04:10

I'm Autistic and have ADHD and 'saw' it in both my twins long before others recognised it (and they were only formally diagnosed this year).
I did a lot of research, linked in with other parents with ND children, attended countless online workshops, joined loads of different FB groups etc.
But, I think the thing that has helped the most, especially with two same age children with the same diagnoses, but TOTALLY different presentations: really making time to try and see the world through each child's eyes and try to understand how they experience the world/daily living.
I try to keep things low demand at home, which also helps me!
And, fighting tooth and nail to get the support they need in place at school has DEFINITELY helped.

autienotnaughty · 10/07/2024 06:17

I read lots of books including
Ten things an autistic person wished you knew and explosive child.

I did a course offered by local authority. Joined local charity. Joined a couple of Facebook groups including one called ask the autistic adults which is very helpful.

In terms of parenting the biggest part of my parenting is managing my son's environment. So ensuring he has routines to support him. Allowing him his obsessions and understanding their importance. Not getting angry about meltdowns but rather understanding he is overwhelmed and reflecting on what went wrong. Not asking more of him than he can cope with. Breaking down difficult experiences in to smaller chunks to makes them more manageable then building up. Advocating for him. Giving him sensory breaks when needs. Recognising when he's struggling and reacting early. Modelling the behaviour I want.

I rarely need to discipline as his behaviour is rarely'naughty' but when I do we do a time out. But it isn't delivered in anger, rather I sit with him and support him to calm down. Then when he feels more regulated we go back.

Whatafustercluck · 10/07/2024 07:44

When dd was at her worst, I took tablets to help me stay calm. Often, the battle of wills, the emotional and physical stress on you as a parent feeds the cycle of anxiety in your child. I took Kalms, not heavy duty anti depressants, which worked (no idea if it was real or placebo effect). I also finally recognised that battling with her into her clothes, out of the house and into school every day was making things worse, for everyone. Once she'd reached the point of school avoidance and was no longer leaving the house, even to do the things she once enjoyed, it struck me that by baby was really very poorly indeed. We stripped back all demands - all of them - for a period of time, while we gradually helped her mind recover. Loads of praise for the small daily wins, like tolerating one item of clothing for just a few seconds initially. Loads of no pressure time together, just doing stuff she wanted to do. I took time off work in order to get her regulated again.

Is your son in mainstream, op? Does he have an ehcp? If not, you should apply for one. As soon as my daughter's needs were properly understood at school, and the appropriate support was put in place, her anxiety reduced massively to just a series of occasional 'blips'. Her behaviour improved as a result of the interventions and so did our relationship. We all look to ourselves to be a better parent, but often redicing the negative impact of outside influences can be effective.

mybeesarealive · 10/07/2024 07:59

You may need to allow yourself time to grieve the life you thought you would have and to accept the one you actually have. You need to rethink your views on discipline. It's worth reading up on "distressed behaviour" and reaching an understanding that lashing out is a feature of the disability. It is the result of overstimulation, frustration and sensory input. My son was like yours. It will get easier as he gets older and develops coping mechanisms. The underlying driver is normally anxiety. You can't cure autism but you can mitigate anxiety, and that brings the baseline down so the lashing out reduces. You're in the worst of it at the moment, but stay strong and it will improve with time and patience.

Aspierational · 10/07/2024 08:07

I'm not an autistic parent but I'm an autistic adult. I would suggest moving to an extremely quiet location, letting them have plenty of time alone and when they're older letting them be alone in the house regularly, encouraging painting/drawing/piano or other creative activities, making sure they know you don't have any expectations of them, getting noise-cancelling headphones, maybe adopting a cat as they are quiet and therapeutic animals (not dogs).

Edited to add: the key is to know that everything in normal society is overwhelming for autists and meltdowns etc. aren't going to reduce while trying to live in a conventional way. If you live in a normal, noisy place with cars going past and dogs barking and planes flying overhead, there's no chance they won't get overstimulated every single day.

MistyFrequencies · 10/07/2024 08:20

Ausome Trainers (google them) have online courses that are soooo helpful. All the trainers are Autistic. I did their course about parenting your Autustic child, one about What is Autism, and one on Autistic communication. Life changing stuff. Also, get an Occupational Therapist trained in Sensory Integration.
And beware of Applied Behavioural Analysis/ ABA; overwhelming evidence suggests not effective and harmful.
You are doing great even looking for other parents advice, your child will thrive with a mum like you.

crummyusername · 10/07/2024 08:26

Look at Non Violent Resistance (NVR) - recommends de-escalation in tantrum situations and discussing things when the child is calm. I’ve given my child way more space and slowly realised that putting pressure on him is entirely counter productive. my son has gone from violence and non cooperation to a much more functional state with no violence ever. He still gets angry and can be very unreasonable and intense, so it’s still a struggle many days but so so much better.

StrictlyAFemaleFemale · 10/07/2024 08:30

I installed pictogrammer on my laptop.

Read
How to talk so kids will listen
Autism a practical guide for parents by Alan yau.

Went to a lecture on conflict management and autism which should probably have been called conflict prevention.

Might he need a play tent or something he can escape to?

Zoflorabore · 10/07/2024 08:31

I have 2dc. They both have autism.

my ds is now 21. He was diagnosed aged 8 in 2011 when I had my dd.

my dd is 13. She was diagnosed last November after a long wait to due to Covid.

They couldn’t be more different!

however, what has stuck in my mind from when ds was diagnosed was his doctor at Alder Hey saying to me “play on his strengths and work on his weaknesses” and that’s been such good advice for both of them.

Shardonneigghhh · 10/07/2024 08:57

I have 2 autistic teens. I've learned to accept who they are, not expect them to be who society tells me they should be. Parenting with rewards/punishment doesn't work. I communicate and explain why. Look at PDA. How you word things is important. "Come off the playstation, it's time for bed" is a demand, instead "It's pretty late now, do you think you should come off so you get enough sleep" is met with "oh yes I should probably come off now".
Accepting that social events are not for them was hard. Family members expect their attendance but I let them make their own choice.
Keeping things as samey as possible, no unexpected changes of events.
Giving them as much control as possible over their daily routine.

EilonwyWithRedGoldHair · 10/07/2024 10:30

With DS - pick our battles.

Yes I'd like him to have clean clothes every day, but that's not going to happen and if we push it he's going to get dysregulated and have a meltdown. He was really struggling with school attendance so we've gone very low demand at home so he can attend school as much as possible - if he's in school they can do ELSA etc and he engages with school staff with things like that when if we tried it he would get dysregulated.

Bedtimes - before he was prescribed melatonin he wouldn't go to sleep until 1am or later, and started refusing to go to bed at a normal bedtime - which is fair enough, who wants to be stuck in their bedroom awake for 4/5 hrs or longer? But he did like to go out for walks in the dark, so that was our routine for a while.

As others have said - work out what the triggers are. We monitor his mood, so we know when to push a bit and when not to.

ainyxedi · 11/03/2025 12:35

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