Socialising when your child is autistic.

[mytinyfiredancers]

I became a sahm (out of choice) when my DD was born. Ever since she arrived I struggled to socialise with her. As a baby, she used to scream and scream but I just put that down to being a baby (and she had silent reflux etc so she was generally a difficult baby).

As a toddler she would never play with other children. If I took her to a group she'd stay with me, only playing if I was by her side. If I tried to have coffee with a friend for example she'd sit on me and create unless I was giving her pretty much my full attention, playing and talking with her.

I could never deviate from her routine, missing a nap for most is no big deal you just get a grumpy baby. For us it meant disaster for days. So, further isolation for me and everything even if I did try to do something had to be around her schedule.

She's 3.5 now, and was recently diagnosed with ASD, after I put her into preschool for her funded 15 hours with the aim of preparing her for school and it became apparent that she just couldn't cope with the transitions, was highly anxious, massively sensitive to noise, couldn't cope with groups of children etc etc. We had her assessed and yep, it's autism. It was like a light switched on and all of the difficulties I'd had with her made sense. She currently does about 9 hours a week and has 1-1 support all of the time.

She's generally highly intelligent (not bragging, she is extremely cognitively advanced, but her social development is way behind), her vocabulary is huge (though she is very repetitive) and she converses and generally behaves like a little adult. The doctor who assessed her explained to me that she feels more on a level with adults then her peers because 1) she doesn't understand the concept of authority or treating adults differently/with more respect etc and 2) because adults are more predictable than children she feels safer with them.

Normally she's ok with family and I had my in laws around to see us today who she spends a lot of time with and adores. Something seemed to set her off and she behaved in the way she normally does when I'm with friends - ie wouldn't let me hold a conversation without interrupting or being in the middle of it/on me. It's not like when a NT 3 year old is just acting out, it's much more intense than that and I can see her distress building and building.

I handled it like I usually do (by explaining that it's rude to interrupt, Mummy is talking with Grandma, trying to distract her with an activity etc etc) but she was out of sorts all afternoon. In the end, she actually asked her grandparents to go home because she needed peace and quiet (her words) which is 1) mortifying (though they won't take any offence they are fab and very understanding) and 2) unheard of. She loves them.

It wasn't until after they'd left (they were going anyway) and my MIL messaged me to see if I was ok and asked if that had happened before that it dawned on me that it always does. Never with family, but always if I try to do anything that resembles socialising - even if it's a child related activity - I literally cannot remember ever being able to see anyone socially with DD in tow and it not being awful. I didn't realise just how isolated I've become. I only see friends now if it's of an evening (rare as we all have young families) or I've been able to leave DD with a grandparent (also rare but which she is usually happy to do)

I also have a second DD who is just one year old and the polar opposite of her sister, the most sociable child around. I'm determined that she won't miss out but honestly I don't know how I'm going to get her to things until next year when my older DD starts school.

How do you do it? How do you manage to have a child like mine and stay sane, manage to see people, not take it to heart if you do see people and they just think your child is bratty and that you're a shit parent?

Thanks if you got to the end of that, it was way longer than I intended. This is all so new to me, I don't know anyone else with autism, and as far as I know there's no family history.

Find other families with dc with asd join local groups..good for the sibling as well
If she is content with iPad and headphones use this when needed. Forget usual rules.
Start looking for short breaks and respite services and sibling groups early on so from now

I wish my friend could see this thread. Her DD is as you explained yours and she has isolated herself from everyone to avoid having to deal with her DD's behaviour.
We have all assured her that we would still love to see her/ miss her company but she gets so stressed by her daughter's behaviour that she never does.

My DSD is autistic and it has always been the same for her parents too. They split up when she was young so they do their socialising when they are not with her.

Sorry probably not helpful.

Social stories are great. You can get them already written or do your own.

Also rehearse what is going to happen if you go somewhere. So. We are going to drop xyz off at Sally's house. We will get out of the car, walk to the door, ring the door bell. Sally will answer and I will talk to her. Sally might ask us in. We can go in and you will have squash and I might have tea. If Sally asks you if you want squash then say (yes please, no thank you). While mummy and Sally talk, you can play with your bag of toys. We will be going home so there is no need to interrupt. We won't stay for very l9ng ( make sure you don't).

What will you do when we go to Sally's house?
What will you NOT do?
If you are worried about something then what will you do?

Perhaps set this scenario up before hand with granny or someone?

Mine had hysterics about washing machines. Had an obsession with toilets. Oh lordy, was hell. I was isolated by other parents and couldn't really go out. At the moment, when they are so young, it's not so bad because there are plenty of three yesr olds being ...well..three and demanding. Gets more sticky once a bit older. Mine is now an adult and loves socialising. He can still come out with really daft things though so I still can't relax. You HAVE to build in escape time for you. Heartily recommend a couple of weekends away by yourself during the year. It's the only way to survive.

My heart goes out to you. I grew up with an autistic younger sister.

I would have really benefited from the opportunity to fully air my feelings about living with a very disabled sister who inevitably disrupted and impacted shared experiences in the way you describe. Simple things that should have been enjoyable, like going clothes shopping with my mum as a teenager could be ended abruptly if my sister had a meltdown in the shop. I was always just expected to cope and keep my own feelings to myself because she couldn't. It's taken a long time to learn that it's OK to have "unreasonable" emotions and feel disappointed, even if it's not OK to make a fuss.

Socialising: yes, it's really difficult and not just for you as you have already realised. When I started secondary school, for the first time I was with children who didn't know my family and therefore my sister. There was an incident where my new friends bumped into my brother and younger sister at the park, and one of my new friends started mimicking my sister. My brother told me, my friends told me. I was mortified and then realised that my sister was like a litmus test and I didn't want to be friends with people who were cruel to someone who was disabled.

We were involved in a charity for disabled children and their families and that was amazing as it was such an inclusive atmosphere. My mum was always battling against the forces you describe to take her away from others but it did get better.

Over the years I have come to realise that truly inclusive spaces are just the most amazing places to be and I now seek that out and feel sorry for people who haven't experienced being around this.

I socialise during term time school hours. In school holidays we don't see anyone during the day because ds can't cope with it and because he needs my full attention anywhere outside of our house. Some of my friends socialise at sn activities but ds can't cope with those either.

@absopugginglutely The thing I would say about your friend is that it's not that she doesn't want to see you or wants to avoid dealing with her DD. It's that when she does these things it's not enjoyable in the least for her, or the DD. No mother is going to have a pleasant time when their child is in a state of distress. As much as she normally enjoys your company, she doesn't when DD is there because actually she can't concentrate on a word any of you are saying or hold a proper conversation with you.

But don't think she doesn't value you. Or love the time you do actually get to spend child (or her child) free. She values it more than you could imagine.

Or that's me, anyway!

We adopted two siblings aged 3.5yrs and 20 months. Both turn out to be on the spectrum. But first we discovered they had ADHD! Then sensory problems and finally ASD at the age of 8/9.
I agree with the OT suggestion. Have a look at the sensory diet on line it may ring a bell and be useful. Our DD found weighted vests very calming and DS liked fidget toys for quite a while. In order to ensure that we gave equal attention to both children and also have some sort of social life we used to divide and conquer in that we would take one each and do a different activity with them be it out and about or at home. Really made a difference for me to have a break from DS who was always very full on. They are now 17 and 15 and much more self reliant but still very obviously socially awkward. Good luck. xx

We've just finished attending a course at the clinic where DD was assessed over two weekends and did find it helpful (hence the new timetables etc). Am going to seek out some more though perhaps some free or lower cost ones this time! It was nice to meet some other parents too although all of them had much older children so not so much in common. We did leave feeling fortunate that we'd got a diagnosis at such a young age.

Definitely going to give the social stories a go. They did say she might be a bit young at three but she's pretty switched on so I'll give it a try.

Very interesting to hear from a sibling. Of course, younger DD could also have ASD (it runs in families apparently? Although there's none on either side of ours so god knows if that's true) however I suspect she doesn't. She's only 13m so impossible to tell but she couldn't be any more different to her sister even at this young age. She seemingly has none of the quirks her sister showed, and is a happy, confident, sociable little girl. I'm determined that as far as I can manage it she won't be disadvantaged by her sisters condition.

Teddybear45

I will not crticise you using a regime that was successful for you and your family .

But please don't fall into the trap of not understanding the spectrum of difficulties experienced by other autistic people and giving 'one size fits all' advice.

I have a great deal of experience, both personal and professional of children being severely damaged by your approach. It has not been the saviour of behaviour and mental mental health for many.

Inappropriate expectations and rigid boundaries can cause extreme anxiety and even traumatic responses from some autistic children.

Sorry, inappropriate expectations are damaging for all children!!

I would encourage you to find groups in your area, we have one called Autism in Motion and they are fantastic.

I have 6yo autistic twins and an 8yo who is being assessed.

Activities are for all the family. So inclusive with brothers and sisters joining in. From coffee mornings to swimming lessons, special support for issues like eating, understanding sensory subjects etc

The feeling you can breathe and others 'get' what you are going through is amazing. Every child is different. All face different challenges. All need love and understanding.

Hello OP, I have a DD who has autism. She turned 5 in August and is in year 1.
Reading your post was very familiar and it's tough!
Like a PP said, now she is 5 her understanding of the world is so much better and she is generally much calmer about things but I remember the screaming and confusion very well.
We have visual timetables showing her the plans for the day, we also have a timer that we use and she has ear defenders for when things get too noisy.
In terms of play dates it's difficult because she will always be different. My DD like yours never ever played with children but was happy to play alongside. She will now play on occasion with children but only for a short period of time.
When meeting up with people with other children we try and go somewhere either outdoors where there's lots of space or somewhere like soft play where I can chat to my friends whilst she plays. As I said previously she will play for a while then seems to be exhausted from it and needs quiet time.
I've found there's quite a few parents in my DD's year with autism and going out with them they're very understanding.
Things like restaurants or eating out is difficult for us with friends so we just resort to tablet and ear defenders.

Sorry just read your update. We use social stories although I would say that my DD didn't really understand them until she was around 4. Whilst her vocabulary was very good her actually understanding of what she was saying wasn't.
We also have a younger DD who is 2 this month and like yours is definitely not showing any signs of autism. I think she has been good for my older DD and they love each other and has brought out DD's affectionate side and is very protective of her.
My younger DD constantly wants to play with her when my older DD would often rather be alone which can be problematic especially when she wants quiet time.
We manage it as best we can and will take DD2 downstairs and play with her one on one of we recognise that DD1 is struggling. I hope as DD2 grows up she will understand that her sister is a bit different and will be respectful of her need for space.

Self referral to the local county council for OT, done! Thank you for the recommendation, not sure how long it'll take. Can look into privately if needs be but thought might as well check if DD is eligible for it via the council.

@Daisychainsandglitter My DD is the same. Her vocabulary is massive and as I said previously it's like speaking to a mini adult. I have to remember though that her understanding might not be up there with her speech though the context she correctly applies makes me positive that she might get the general gist, hopefully anyway!

@Daisychainsandglitter my DD is also the same with her younger sister. Loving and protective of her, she calls her 'my baby'. She's never lashed out at her once, though she doesn't lash out like many autistic children seem to. She more draws in on herself than lashes out when she's distressed. She cries, but isn't aggressive.

I have autistic twins who are 3. They’re non verbal but I suppose at least that means they can’t tell people to leave... every cloud?!

I can’t socialise with them around although they’re very different to your DD - I just can’t trust them not to really hurt themselves, choke or otherwise come to harm.

There’s one toddler group at a specialist school - I get to talk to the other mums briefly while they’re in the sensory room. Otherwise that’s it.

If you ask your paediatrician if they know of any groups or charities local. That's where I got the heads up. All our socialising is with parents who have children or young adults with SN and it's been a godsend.

I think your DD is doing really well to recognise when she’s feeling overwhelmed and going up to her room. I’d be inclined to help her to recognise her own feelings by observing her closely in social situations and looking for the signs that she’s starting to feel agitated ( we call it the amber zone here). Then you can echo her emotions in an indirect way ( ‘ I wonder if you’re feeling X?’ ) and support her to self-regulate
( ‘Would it help to do X / go to Y?’ ) I’ve just retired from SN teaching and have a 17 year old with autism - I would say that the young people who’ve been happiest and made most progress ( from whatever baseline) are those who can self regulate.

If this is too many words for her, you could use pictures or symbols.

My eldest (with dyspraxia) was very like this and grew out of it to some extent. 3-5 was the most demanding age for those with social difficulties, in the sense that they want you to make sense of the world for them all the time, like a much younger child. I had the constant interrupting and not being able to play with the other children without fighting or controlling them, or even cope with me having a friend round to coffee.

It did get better though. If you can find a friend who has children who like to do what I call "romping", making houses out of tables and cushions, jumping on the trampoline, small climbing frame it is actually much easier to children with social difficulties to play. The parents have to get involved though at the beginning of the friendship...my best friend at the time, and the house ds1 loved going to, was able to combine chatting with me, with organising the easy activities that meant we were interrupted less.

Better still is if you have a group of 3 parents or more, and one person is the designated supervisor of play and the other two chat

Playgroups are really much easier than anything else, you can play with your children and still get the chance to chat/make friends even if half the time you are having to engage fully with your child. That was a good half way house for my son..he learned to run off and do other stuff away from me and he liked the company of the other children, but i was there to bounce off.

My second son had ASD, but funnily enough was always very sociable and loved going out and running around as long as there was a lot of downtime in the day where he was alone and could just play by himself (with his Brio set or his bricks) so again there was a lot of supervision involved, chasing after them checking he hadn't fallen down or off the slide, but plenty of time to chat with other people in the playground whilst I was watching him and his twin sister.

tbh I had less social life when they went to nursery in the mornings, playgroups had always been much more friendly and sociable, whereas a nursery a hierarchy seemed to develop between those who picked up and rushed off, the people who arranged endless playdates, and those like me who were viewed as less suitable candidates for playdates or visits due to sons' temperaments

But playgroups, soft play any sort of inclusive group with a variety of ages where much better places to socialise, and conversely, finding just one nice friend with similar age group and goals for her kids changed my life really.

My kids, two of whom had social communication difficulties, simply loved other people's houses and the stimulation of visiting other people toys, households, as long as it was all "prepared" in their minds and they went to the same house a few times, so don't underestimate the importance of venturing out even if she is difficult when you get there. The more you can model that somewhere is a fun place to be, make accommodations for her when you get there, organise it in such a way that she really enjoys the stimulation and "change" as well as familiar routines, the more likely it is that you will find her branching out and adapting her social skills and toleration of new environments. So for example you could always bring a toy that she likes at home (but doesn't get to see very often) or colouring/craft that you don't do often at home to the new place or when you have friends over, so she associates that with you socialising. We often did things like playdough when my friend came over with her kids, it was more fun with another adult involved and my kids got used to the shared attention.

Hi OP

Have you ever heard of Applied Behavioural Analysis (ABA)? There are a lot of threads on here about it and if you google there is a wealth of information on the internet. If you're on facebook you can also visit the page ABAA4ALL. I tried everything with my son - diet, OT etc but this was the one thing that I believe made the most difference.

Good luck - it sounds so tough for you at the moment - often you don't realise how hard you've had it until you have another child who doesn't have these issues and you realise how much you have been intervening to keep your ASD child from melting down.

Ds2 went through a stage at 11 of being incredibly controlling so that I couldn't talk to an adult without him being distressed and interrupting and wanting to dominate the conversation. But looking back, this was always when we were in static situations and he had nothing to do with himself (like in a cafe for example or waiting on a bench) Once we were walking around, or engaged in some physical activity or heading for some goal rather than just chatting he was like a different child.

you can of course incorporate OT related principles into ABA. lot of parents do ABA and "early intervention" without realising it. Sometimes when you feel you are wading through mud, you are actually getting somewhere - it is a developmental stage that you are going to get through and you are already doing exactly what is required, even if it feels gruelling.