To think my autistic child isn't ready to go out alone?

[AnonymousMum37]

DD has just turned 9 and is diagnosed autistic. She remembers that when her older brother was 9 (very mature and sensible), he started to occasionally go to the local shop by himself (2 roads away, including crossing a main road at the lights with the green man).

She is now fixated on going out on her own.

The issues for me are:

• She is emotionally younger in many ways than most 9 year olds, she has frequent meltdowns most recently lying on the ground screaming and it took us 45 mins to walk a 10 minute journey after a difficult day at school.

- She will not talk to people she doesn't know.

• She has a fear of dogs and has been known to run into roads if they approach her.
• She is impulsive, she frequently climbs into shelves at the supermarket in the split second I'm looking elsewhere and doesn't respond when I look for her.
• She has rituals she has to follow like walking a certain number of paving slabs before turning, climbing onto certain bollards, only walking through the middle gap between bollards if there are an odd number and the left if the are even, while she completes these she has no thought about others who might be coming her way or if they are blocked or unsafe because of how cars are parked etc.
• She struggles with transitions and leaving places, it can take us 10 minutes to get her out of the pool after her swimming lesson ends, and we were in the adventure playground 20 minutes after it shut despite multiple countdowns and several staff members, myself and a friend all supporting her to leave as they were locking up.
• She reacts extremely strongly to what she perceives as being 'told off' by strangers e.g. when a librarian asked please her not to stand on a shelf as it wasn't strong enough she had a huge meltdown.

I could go on. I tried to talk to her about building up to it slowly because she needs some skills first, and she said it wasn't fair that she can't do things because she's autistic (not my phrasing).

Anyway,

Yesterday I was out and she was with her dad and my mum at home. She became insistent that she was going to the shop and long story short, they let her go. My mum then tailed her and watched her from a few meters behind but she went into the shop by herself. She was cross if my mum was too close and kept telling her to go away. Mum kept her in sight but too far to grab her if anything happened, and she went into the shop alone.

When I got back my daughter was so happy and proud of herself. I said "it's good that you walked to the shop with granny, well done". I have pointed out that she was watched and that's all she's doing for the foreseeable.

I'm just not sure what to do now. I'm quite cross with my mum and my husband for letting her go. I think she gets away with a lot because they are scared of the meltdowns and I think we need to say no to her sometimes especially when safety is involved!!

Where do we go from here? 😕

Am I being unreasonable to be annoyed at my mum and husband for allowing this?

Reading your op I thought it sounded like your DD is just not ready. But the compromise your mum & DH used sounds like it worked really well and boosted your DD’s confidence.

Tailing your DD “a few meters behind” is pretty close.

I completely understand this as I have been both the child not allowed to do anything and the parent of a non neurotypical child who I’m afraid to let do anything.

As a teen/tween I found it absolutely soul destroying not being allowed to do things my sibling was allowed to do. It emphasized to me that I was ‘not normal’ and affected my self confidence and self reliance for a long time and my relationship with my parents permanently.

Now, watching my son go through the same thing I do force myself out of my comfort zone to let him do some things that I feel he would be safer not doing., but I do think he needs to be able to do age appropriate things wherever possible even if sometimes there need to be modifications. It is going to be harder for him than for others to grow into an independent adult and he needs the opportunity to develop those skills.

as I was reading your post I was thinking of suggesting following her at a distance as a compromise. It’s not really up to your mum so maybe she over stepped slightly, but your husband is also a parent and his views should count too.

Huge sympathies though, it is so difficult getting the balance right with children and harder when they are not neurotypical.

The only thing that made me feel it might not be a good idea was the running into the road to avoid dogs. The other potential problems made me think that being alone might in some circumstances actually help her to regulate her 'inappropriate' behaviours. Especially if she is feeling proud, her best self, etc because of the responsibility that has been given to her.
Some of the difficulties that you experience going out together might be partly influenced by a 'demand avoidance' dynamic? So that if she was the one in charge they might diminish.
I think I would be tempted to give it a shot. Perhaps negotiating with her to allow you to follow at a distance the first time - although maybe that only worked for her nana and might provoke opposition if mum tried it.

I think your mum took a pretty sensible route tbh. She was nearby and would have stepped in if needs be. I wouldn't be cross with her. DD will have to learn independence skills at some point. The point at which she'll be able to exercise them completely wherever she's ready or not - because she's an adult - will come just as soon for her as for any non autistic child, so she does need to move towards that. It was clearly important to her to do this specific right of passage. So sounds like he's wanting to grow up and gain more independence, which is a good thing.

YABU. The solution her dad and your mum came up with is brilliant, and you should do more of it.

Its a baby step. She has to "go on her own" and show you she can handle it. You will trail behind, do NOT get involved unless it seems like she is in danger or needs help for a melt down. You can get more of an idea of how she handles things in reality, know what rules to put in place for her (ie, "if you see a dog, run away from the road") and it will boost her confidence.

I was a PA for an autistic lad once, an adult . One thing that helped him was texting updates of his solo journey. He used to do it with his mum, and asked if he could do it with his PAs now so he could take longer solo journeys. Of course we agreed.

It did mean I, as his only PA in the end, got multiple text messages a day - "at the train station", "off the train now", "I am going to the bathroom in (shopping centre)", "I've arrived", "I'm going home now" etc - even on my days off... Haha. But hey, it worked for him. He said it helped him keep calm and on track.

Does your daughter know she is autistic? Can you talk her through your list of concerns and then focus on practising each of them individually? For an autistic child these may need to be specifically taught in a way you wouldn't for NT child. Social Stories may help, talking about what to do if you see a dog, need to get help etc.

I'd definitely let her go OP.

If she feels she is ready, she most likely is. She needs all the confidence she can get, and this could be an 'easy' (for her) booster.
In familiar territory.

Autistic kids need exposure to learn to do things, to learn to self regulate. Which is not optional: they simply must to be able to function.

I get that it's nerve wracking for you, I truly do, but you need to give her some independence little by little. She did well, both you and she can be proud!

Your mums solution was very similar to what we did. At first we walked her to the shop then waited outside while she went in, found what she wanted and paid. Then when we knew she was comfortable with that we stood on the corner where we could see her cross the road and walk into the shop and phased it up to her doing the whole thing herself.

She’s growing up and part of that is wanting more independence, it’s your job to find ways to facilitate that while keeping her as safe as possible and letting her learn the skills she needs.

I have autistic kids and have similar fears and concerns about allowing them to be more independent.

But I also have an autistic sibling. Our parents were always too scared to let her try things - they were terrified of her meltdowns, afraid she would be hurt, scared of how vulnerable she is in the world. So she has never learnt to do anything and is now - in her 40s - living with our parents. She has never worked, never had a serious relationship, never lived alone. Our parents are ageing and clearly relying on us siblings to take her in, even though we have all said that we will not, so that is a terrible horrible situation that is hanging over all of us - at some point my parents will be unable to look after her and we have no idea where she will go then.

So every time I’m scared of letting my kids do something I also know what the consequences are of never letting them do it.

I think your husband should have discussed the decision with you first, but ultimately it was a sensible strategy and now you have a way to build up to doing more independent things.

It's scary, but it sounds like it's time to build on the skills she needs to gain the independence she is asking for.
You know her well and can identify the situations where she might be at risk. Would it work if you drop little hints and tips in while you're out and about together? "Ooh, I can see a bus coming, let's move back from the edge of the pavement. Would you like to cover your ears incase it's brakes are loud? Ooh, can you see that car has white lights at the back? That means it is going to reverse, let's pause for a moment and wait to see what it's going to do.
Both mine are autistic, dd has a massive drive of justice. Supporting her aims is much more productive than saying no.

When I got back my daughter was so happy and proud of herself. I said "it's good that you walked to the shop with granny, well done". I have pointed out that she was watched and that's all she's doing for the foreseeable.

Well that’s one way to burst her bubble. You couldn’t have said well done for all the things she managed on her own, with arms length supervision? Celebrated the small wins, recognised that for her it was an exciting achievement. I could never have taken that away from my DD, what you said was really unkind.

How on earth is she going to learn if she’s only allowed to do things that are completely safe? My DD14 has autism, I get it’s scary to loosen the reigns but it’s so important for their development.

I think what your mum did was a nice solution and provided her with a safety net.

For what it's worth I'm similarly protective of my almost 9yo autistic dd. She's actually very confident and able in many ways, and quite mature (behaviour, ability) - but also emotionally immature. She's also afraid of dogs, and we know that if anything 'unplanned' happens it can really throw her off and knock her confidence in a big way where she remembers the bad things and thinks the same thing will happen again. With her, we have to prepare her with scenarios and plan Bs. Things like "if this happens, then you should do this" etc. We've done pretty much as your mum did - given her a little independence in a familiar setting or scenario, provided a safety net and equipped her with coping strategies.

I get it, I really do. Our ds was also more independent at her age. It does feel like she's comparatively more vulnerable. But stopping her from doing things would just teach her that she has limitations and prevent her from developing confidence in herself and her ability to develop coping strategies.

This was my first thought when reading your post op.

Why did you respond like that?

This is exactly where we are at with our 9 almost 10 yr old with Aspergers. Daughter is seeing her peers wandering around the village themselves and feels she wants to start walking places herself.
We have had her independence in mind from when she was tiny and have walked her everywhere and in the last couple of years have been doing social stories and commentary on possible situations and what she would do. She eventually managed to walk home from school herself last year (2 mins up a straight quiet road) but still prefers me to walk her down.
A few weeks ago she was desperate to do the independent shop walk so I did the trailing behind thing but in the event she couldn't cope with me being more than a few feet behind so I looked like some weird stalker. She managed the shop bit fine but the road walk was too much. She was on v high alert and probably needed her ear defenders which she'd normally wear in a new situation but that wouldnt be safe.This is despite her happily doing cub camps and clubs independently and having a fair bit of independence playing out in the cul de sac.
This is all just to say it takes a very long time for her to achieve milestones that others do even with all the prep and help and sometimes that still takes me by surprise. But, she is making progress with it by doing it at all and until recently wouldn't have even considered it. The fact she's even noticing what others are doing is progress for us. My point in your support is that even though everything takes longer, as pp have said, you need to be the positive leader that keeps pointing her to what will be possible at some point by doing the tiny steps over and over and over and over.
I definitely understand the anxiety over it and the difficulty of others not really understanding exactly the specifics of her challenges. The fact she was so pleased with herself is a brilliant thing. My daughter hasn't requested to do it again yet so it'll be up to me to lead it at her own pace again. We'll have plenty time over summer.

I also agree with this.

OP, I think that was a missed opportunity to big her up and quite counter productive.

But I guess you were determined that she won't be allowed to go on her own for a while yet. I do hope PPs comments are making you reconsider.

You parent the child in front of you.

before kids I thought there would be house rules and at 10 they could walk to the shop, 11 go in the bus to school etc etc.

but every child is different.

my eldest at 11 was competent to go on a local bus. My youngest at 11 was absolutely unable to do this - no self awareness, no safety skills, just not ready to be out of my sight.

both have some of the the same diagnosis / disabilities but both also have other things and present very differently.

if billy walked to the shops at 9 - that is billy. Good for him - he was ready .

you decide when your daughter is ready.

It is harsh but even autistic kids have to be helped to understand that life isn’t ‘fair’ and not everything is blank and white. Vvvv hard when their brains are wired to think that way - but repetition and teaching will help them to understand that fair dnd equal are not synomous .

teach them the difference between fair and equal - it is fair that both my kids get fed and they have the same food - but I don’t give equal amounts to everyone - the baby has a few spoonfuls blended up and the teenager has a plate full of the same as they need more. Fair is not the same as equal.

I bet there are things your son did at 9 that she has no interest in. Point out to her that just because she is 9 now, she doesn’t have to go to football 3 times a week or play fortnight every night for an hour or go to karate or play the trumpet (whatever activity he did at 9 that she has no interest in) Just because she is 9 you don’t force her to do everything he did at 9 - everyone is different abd treated as the individual they are.

it is a very hard lesson to learn and of course you keep on working towards her safely and independently doing more - but you judge when she is ready to do it based on her presentation - the age is irrelevant.

Yes she will have meltdowns as she won’t instantly get the idea of fair and equal snd sounds like she has got pretty obsessed with the ‘at 9 I can walk to the shop idea’

parenting autistic kids is hard but you have to do what is right to keep them safe and gently educate them to help them to understand more and more how the world works.

I think you can build on this- “you can go to the shop with someone close by until we’ve practiced your skills”.

Then a lot of conversations about “what do you do if a dog comes by” - she responds “step to the side until it has passed”, practice interacting with the shopkeeper, “what do we do if the shop says he is closing” etc etc. It will build her a fixed list of responses to your scenarios of concern. Then you keep tailing her, at a distance, possibly increasing it as her ans your confidence increases. You might even get to see her respond to some of your scenarios.

If she wants to do it I would go with it in a scaffolded and safe way like your mum has done.lots of work now but you will be so pleased you did it when she is older and it will have a huge impact on her self confidence and resilience which will be good when she hits teen years, which are likely to be tough for her as a neuro divergent person..

What age are children at her school allowed to walk to school on their own? Some schools it’s year 5 others year 6. Is she the the sort of child who will realise that her peers are walking home alone and she isn’t.

perhaps use the upcoming summer holidays to practice road safety in a way you’re both comfortable with and so she can build up her confidence.

i wouldn’t be angry with dh and mum

I'm with you. If a child will run into the road then they should not be out of reach when out. It is great that it went well this time but what if a dog came round a corner next time. Your DD needs to learn how to safely respond to her triggers before going out alone.

Your DD needs to learn how to safely respond to her triggers before going out alone.

Dont underestimate the power of “I need to manage this” that comes with not having an adult right there to scoop in and do it for you. The OPs mum was within helping distance, and could have both looked ahead for known issues and reacted to help. She wasn’t alone, there was an adult at hand. My DD, also with autism, has surpassed my expectations at times when she’s had to react or respond to tricky situations. It builds capability, confidence and resilience.