If you are a ND adult do you recognise that you were a difficult child?

[ASDmam]

My son’s ‘truth’ is that everyone is horrible and screams at him. the truth is he has lots of family who love him and we are trying our best.

I worry he will grow up and believe we were all against him.

I was looking for a bit of reassurance that this will not be the case.

A little of both. I had complex MH issues as a teenager and think that must have been hard for my parents to deal with - there were some things they handled very badly (in my mother's case due to her own MH/addiction problems) but for the most part I think they did the best they could at the time. I have a few bad memories but no bad feelings over it.

The way I was treated as a young child is more difficult. I recall being told that I 'wasn't a real person', that my disability was God punishing my mother, that I was such a difficult child she wanted to give me to social services. That my behaviour was horrific. It wasn't until I was in my twenties and worked with children that I realised this was wrong. I masked and behaved perfectly at school (extreme anxiety), and misbehaved in a very ordinary childish way at home. I think she mistook sensory shutdown/freezing for defiance - and the more she screamed and swore at me, the worse it got. I used to blame myself (thinking I must have been a truly awful child) but having seen how other parents react to both normal misbehaving and to their children's specific needs (empathy in the latter case, rather than anger that they aren't 'normal') I realised not all of it was my fault.

I expect much of this isn't relevant to your specific situation, OP - but I will say that shouting can be much worse for autistic children than NT ones. To this day if someone shouts at me, no matter the reason, I go to pieces. I wish I didn't, because it's embarrassing, but I really can't help it. And as an adult I can walk away or tell the person I'll discuss the issue when they're calmer. Children are trapped.

@NotAshamedToFancyTheGrinch

You should probably start another thread with the title "help my ND son is suicidal" (or something like that) for some more relevant advice. I'm not sure why your first concern is what your son is going to say about you in the future. Focus on the here and now.

It’s not my 1st concern, I’m very much focused on the here and now from moment to moment, but the future is also a concern of mine.

Some posts have helped and I appreciate those who have.

@MeltedButter

Please follow Joe James the autistic photographer and Kristy Forbes on Facebook.

They have plenty of advice on how to parent ND children and they are ND too.

Summer Farrelly and Chloe Hayden are brilliant too, both autistic.

And it’s an awful question you’ve asked. Of course they recognise that their behaviour is difficult for others, but the impact on the autistic child’s self confidence and self esteem is often devastating. And would you like to be asked that question when you couldn’t help the behaviour? Because it’s part of their disability, not something they are choosing to do.

I didn’t mean to sound so harsh, I know you are genuinely asking how to help your child, just the wording was perhaps a little out.
As above, hearing from actually autistic children and adults as to what works/doesn’t work for them is the way to go.

And finding a team who understands autism and trauma is so important if you can. Or at least a good psychologist. It’s not an easy path for child or parent but the more knowledge you have, the more you will be able to help your family.

I’m lifelong disabled. I have a neurological condition that mostly gives me physical impairments but also means I’m affected similarly to someone with ADHD.

I don’t know if my experience is helpful but I think there are things in my younger life I might have benefited from being handled differently - the biggest is to do with my schooling and I’m aware was the schools decision. Although part of me wishes my parents had pushed for it not happen I’m aware it wasn’t their choice (and writing this just realised that they could have tried but I wouldn’t know) and they did their best. I’m also sure if that if they had handled it differently I’d think the same about something else.

I’ve never been made to feel like I was difficult as a child but I’m aware that parenting me was different to parenting my younger siblings. I became aware of that as a teenager.

I think I was a 'difficult' child but my parents made me feel like I was delightful so I do look back and wonder how they did that.
Although, i am suspicious they just found one of my siblings so hard, anything else was easy in comparison.

Reading through this thread OP I am wondering if it might be worth asking ND adults what their parents did that was brilliant, and that they appreciated either at the time or in retrospect.

I wasn't a difficult child. My parents were savage abusive arseholes in ways that had nothing to do with my neurodiversity. This post is really objectionable

I'm nd and so is my son. You need to find what works for your son not what works for you. We did a lot of reading- It's an autism thing I'll help you understand Emma Dalmayne really helped. Also on face book - ask the autistic adults which is a page where nd adults support parents of nd children. (Obvs these helped for our son as he is autistic)

Look at what your child needs are they sensory seeking or avoiding-
Seekers will need extra stimulation such a fidget spinners sensory toys etc they may get overload though so ear defenders can help.
Avoiders disliked noise stimulation so ear defenders, avoiding busy/loud/bright/crowded places can help.
Some children can be both in different ways so it's finding what works for your child.

If your child has stims - echolia, head shaking, flapping etc don't inhibit as these are stress releases unless it's dangerous such as banging head then work towards swapping for a more positive one.

Communicate with your child in a way that works for them, it could be spoken, pictures, sign language. Understand your child's brain doesn't work work the way yours does so don't expect them to respond typically. My son often parrots back this is not conversation in the was nt people understand it. So if I say "turn tv off" he may repeat "turn tv off" but he isn't saying he will turn tv off nor is he agreeing to tv going off if that makes sense.

If they like routine/advance warning have a daily planner. Talk or show pictures for new things that are happening to prepare them.
Don't punish meltdowns it's not a bad behaviour it's the child becoming overwhelmed by their environment which is down to you.

If your child has meltdowns look at what causes them - change the situation rather than expecting the child to change.

If things help your child such as technology/ fidget toys never take them away in punishment. It's reasonable to set boundaries ie no iPad after 8pm (with plenty of warning:planning) but don't take something that stabilises child away as a consequence

Don't set child up to fail if they can't cope with something don't do it or if you have to appreciate how difficult it is for child and ensure they have things to help through it ie toys, technology, books.

Don't expect child to be 'normal'

Make sure school/child care support child. If diagnosed make sure there's a Sen plan or ehcp in place and ensure school follow it.

Understand if child has sensory issues - fabrics, foods etc don't force child to wear clothes that are uncomfortable or eat foods that they find repulsive.

Try an have a good routine with consistency and opportunity for plenty of sleep. Make sure your child can take sensory breaks if struggling.

Lots of opportunity for physical activity such as running, bouncing, climbing to burn energy.

A good theory to explain neuro diversity is spoon theory. The spoons represent ability to manage tasks/daily life. a person has 10 spoons - having all 10 means happy/settled, having 0 spoons is total meltdown, So if child struggles socially but has to go to an event this might use 7 spoons so they would then need a lot of support for rest of day as only have a few spoons left. Wearing an itchy jumper might take 2 spoons or a change of plan might take 8 spoons. Get to know your child's triggers and help them hold on to as many of their spoons as possible.

I hope some of this helps obviously it may not all be relevant just tried to cover a range of scenarios. Agree Nhs diagnosis leaves you stranded. We found lots of reading, speaking to other families/adults . Getting support from professionals, my son has been under speech therapist, occupational therapist and ASCETS support school. Plus has one to one in school.

@Gcautist

I grew up being told I was a difficult child. I was told I was a difficult teen and adult too… I never had tantrums or showed anger, I did as I was told, never spoke out of turn but I was embarrassing because I wasn’t as socially proficient as my mother and brother and that was me being difficult. Sitting quietly in the corner at family parties was me being difficult.

It wasn’t until recently that my brother told me he recognised I was bullied and abused by my parents for being quiet as it was shameful. He told me I had a much harder time from them than he ever did. He never apologised for making my life harder but it was somewhat validati n to hear that as I believed I wasn’t the problem.

Sometimes you need to look and listen without emotions or preconceived ideas of any child’s behaviour to work out whether perhaps the child has a point. His interpretation of your behaviour is that you are always chastising him and maybe you don’t recognise that. Maybe you need to devise a different approach that cannot be understood as criticism or anger.

It may be neither of you are wrong but you both have different communication styles and your child is telling you how he feels about yours. He’s too young to know how you feel about his. Try accommodating him for a while and see if he’s perceptions change.

I completely relate to that

Also nd people are not difficult they live in a world where they see/feel/hear/experience everything differently and a lot of nt people struggle to understand that.

@DBI78

I'm nd and so is my son. You need to find what works for your son not what works for you. We did a lot of reading- It's an autism thing I'll help you understand Emma Dalmayne really helped. Also on face book - ask the autistic adults which is a page where nd adults support parents of nd children. (Obvs these helped for our son as he is autistic)

Look at what your child needs are they sensory seeking or avoiding-
Seekers will need extra stimulation such a fidget spinners sensory toys etc they may get overload though so ear defenders can help.
Avoiders disliked noise stimulation so ear defenders, avoiding busy/loud/bright/crowded places can help.
Some children can be both in different ways so it's finding what works for your child.

If your child has stims - echolia, head shaking, flapping etc don't inhibit as these are stress releases unless it's dangerous such as banging head then work towards swapping for a more positive one.

Communicate with your child in a way that works for them, it could be spoken, pictures, sign language. Understand your child's brain doesn't work work the way yours does so don't expect them to respond typically. My son often parrots back this is not conversation in the was nt people understand it. So if I say "turn tv off" he may repeat "turn tv off" but he isn't saying he will turn tv off nor is he agreeing to tv going off if that makes sense.

If they like routine/advance warning have a daily planner. Talk or show pictures for new things that are happening to prepare them.
Don't punish meltdowns it's not a bad behaviour it's the child becoming overwhelmed by their environment which is down to you.

If your child has meltdowns look at what causes them - change the situation rather than expecting the child to change.

If things help your child such as technology/ fidget toys never take them away in punishment. It's reasonable to set boundaries ie no iPad after 8pm (with plenty of warning:planning) but don't take something that stabilises child away as a consequence

Don't set child up to fail if they can't cope with something don't do it or if you have to appreciate how difficult it is for child and ensure they have things to help through it ie toys, technology, books.

Don't expect child to be 'normal'

Make sure school/child care support child. If diagnosed make sure there's a Sen plan or ehcp in place and ensure school follow it.

Understand if child has sensory issues - fabrics, foods etc don't force child to wear clothes that are uncomfortable or eat foods that they find repulsive.

Try an have a good routine with consistency and opportunity for plenty of sleep. Make sure your child can take sensory breaks if struggling.

Lots of opportunity for physical activity such as running, bouncing, climbing to burn energy.

A good theory to explain neuro diversity is spoon theory. The spoons represent ability to manage tasks/daily life. a person has 10 spoons - having all 10 means happy/settled, having 0 spoons is total meltdown, So if child struggles socially but has to go to an event this might use 7 spoons so they would then need a lot of support for rest of day as only have a few spoons left. Wearing an itchy jumper might take 2 spoons or a change of plan might take 8 spoons. Get to know your child's triggers and help them hold on to as many of their spoons as possible.

I hope some of this helps obviously it may not all be relevant just tried to cover a range of scenarios. Agree Nhs diagnosis leaves you stranded. We found lots of reading, speaking to other families/adults . Getting support from professionals, my son has been under speech therapist, occupational therapist and ASCETS support school. Plus has one to one in school.

This is fantastic advice.

Bonnie Harris says ‘your child is not being a problem, they are having a problem’. And ‘all behaviour is communication’.

This is very helpful to remember.

Absolutely third this

The ICan network is good to follow on facebook - they do some good short but useful pages. Recent one was on meltdowns and what does and doesnt help.