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.

Didn't want to read and run.

It sounds really hard.

Why don't you ask for the thread to be moved to the SEN board? I'm sure many people have been through similar

I have a son with ASD and he does this all the time- I can’t even make a phone call. He is desperate now for visitors and it’s so sad because we are completely isolated. He was like this too when my husband was at home and we are now separated. I can only offer condolences but not advice as I’m still trying to mc work out how we become more conneected. Everyone toms me when you have a child you get a wider social group but with ASD it’s the opposite and you are excluded from so
Much. I invite my friends children to my child’s birthday only to hear that their children’s parties have passed by and we’re “ very small”. It’s shit.

Thanks for responding. I didn't post in the SEN boards because they're so quiet, I was hoping I'd reach more people here.

DH and I are together, thought there have been some tough times and challenges over the years - namely him not understanding why I wouldn't just be like other parents with DD and accusing me of being over anxious about her behaviour this meaning my anxiety was rubbing off on her. Until he promptly changed his tune a few months ago when he realised there was an actual issue, and not with me.

DN who has ASD was like this and it only got better by setting up ground rules. You need to find a way to explain to her that while it’s okay for her to go to her room at home / remove herself from a social situation at home when she finds it difficult around other people; she is never to interfere with or interrupt you or your younger dd or your / her friends. Social anxiety for kids with ASD can be normal but if you accept her controlling behaviour now then your younger DD will suffer too in the long term.

Hello OP. Am in a similar boat here. DS diagnosed last Xmas and it was a relief in one way because suddenly it all made sense all the screaming meltdowns, controlling behaviour, repetitive speech etc. The relief that he wasn't just badly behaved and in need of a 'firmer hand' was huge but yes our lives are totally governed by whether or not he'll be able to deal with any given scenario.

Things are 200% better now he's nearly 5 though if that's any help. We real ALL the books and completely changed our parenting style. Eg no transitions happen without 'the bell' a little timer we set to 5 mins with a verbal warning for everything and getting ear defenders etc etc. I probably have about 30 things we do now that have calmed things down but yes, we still limit what we do, where we go and how far I'll venture from the car. Eg we used to take DS1 to London to see the natural history museum. No way am I doing that with DS2 til he's 6 or 7!

Have you had occupational therapy for him yet? It really gave us a good steer as to what he needs day to day on terms of sensory input and movement.

Are there any groups for other families in the same situation, because that might be a good place to start. You certainly won't be judged as a shit parent if all the other parents are going through a similar thing. They're also more likely to be set up for the needs of children with autism.

Also, near us there's a lot of autism friendly events or versions of events. So there are relaxed performances of shows, films, exhibitions. Quiet mornings at big stores. You might meet other parents there and find that might open up some opportunities for you all to socialise, or at least get out of the house together and enjoy it?

You cannot be the only local parent or family to be experiencing this, so seeking those other families out seems like a good idea to me, you might find a great friend in there somewhere.

Do you get much downtime? On your own and as a couple? Because I think you should consider it essential to recharge your batteries once in a while. You can't run on empty all the time.

Both of your dds are very lucky to have you.

never @Teddybear45 ? Wow your expactations of ASD kids are a bit high! Maybe a very high functioning teenager might be able to keep that rule but otherwise please get real.

I know some will not agree with this but have you tried a tablet with headphones while you're meeting friends? It's not ideal and I wouldn't recommend it for NT children but it might give you breathing space to just have a cuppa with friends or take your younger DD to groups.

@uptoongirl totally agree. The tablet and headphones go everywhere with us now. Would never have countenanced this for NT DS1 but for asd DS2 it's the only way we can have a (very rushed) family meal or have friends round.

I could have written your post OP. When I'm on the phone DD used to really act up, screaming, punching pinching me. Its now switched to if I'm talking to someone outside she will join in, in her jargon but get very loud and grabby. I have to pause and very firmly tell her to knock it off. If I'm reading a book or magazine, she takes it away from me and would rather I just sit and watch her. Shit is exhausting. I find having something to distract them, or involving them in the conversation or giving them a task ('ooh is that our bus coming?') gives me about 2 minutes to wrap up the conversation lol and move on. I know all of her triggers, I know when shes fed up and wants to leave somewhere and we do leave or those who reallt know her will leave instead. Plus side is, shes getting better at communicating what she would like to do or how she feels so we don't get as many tantrums or hair pulling. Its getting slightly easier and theres almost a glimmer of 'relief' in the distance. You are so not alone OP Hunger Games Salute

Yep i do the tablet and headphones thing too. I figure it's fine as long as they're getting some socialisation of their own at other times and it's not for more than an hour or so. Let people judge.

If I got my son a tablet with headphones it would make no difference as he toiled still shout out at me things he needed me to repeat back at him- I don’t m ow about you op but often it’s not so simple.

I’ve had fewer than 10 evenings out in the last 15 years.

LOL @Teddybear45 My son wouldn’t be able to listen to the rules, let alone follow them.

Thanks everyone. She does have a kids tablet that I let her on for a short time daily but I don't normally use it other than that, definitely worth a consideration. As are headphones and ear defenders.

I will have a look for local groups.

Can someone explain a bit more about OT to me?

Occupational therapy- they will work out her sensory needs and tell you how to modify things to help her OP.

My son is 7 but I felt exactly like you do now when he was younger. (He has autism and attends an autism specific specialist school). I think you just learn to grow a thicker skin as they get older to be honest, you can’t let what others say worry you. My son is now the size of a 9-10 year old and it’s very obvious he has special needs which in some ways makes things easier as people can be more understanding but the less understanding types stare more! We use his iPad a lot for distraction etc. We also live our lives around him. We wouldn’t dream of taking him out for a long day out somewhere with loads of people or to a relatives house if he wasn’t happy about it - he’d probably have a meltdown and then it wouldn’t be enjoyable for anyone anyway! I tend to see people when he’s at school now.

When he was very little I joined a lot of special needs groups and would meet up with parents and children from these so we all understood each other. I don’t actually have any friends who don’t have special needs children. It’s too difficult and stressful trying to explain everything.

OT sounds useful then I will have a look into it.

That line in previous post about it not being enjoyable for anyone rung true for me. It's what I've said over and over when DH has (previously, he's better now) been quite insistent that we take her places (parties for example). "It's no fun for anyone!" is my usual go to line.

None of my friends have any additional needs with their children. I have a group of four friends who I've been close to all my life. We have eleven children between us and my DD is the only one. I do still see my friends but as I said, not with DD. Or very rarely anyway. One is a SEN teacher at a SEN school so she is more understanding but she was also the one who told me in her opinion DD was fine. Just shy and anxious.

And @Teddybear45 your way of just setting our rules may work for an older child but my DD is 3. NT 3 year olds have issues with just obeying rules, let alone ones with ASD.

It worked in my family with support from and the ground rules were encouraged from a young age and also served to ensure the younger child didn’t develop MH / anxiety like other family members did. ASD runs in the family in various forms and the common denominator is that amongst the older generation the siblings without ASD issues also developed MH problems due in to their lives being centred around and controlled by the ASD child. This is the only generation where it hasn’t happened.

This is no use for a toddler but a uni lecturer I had bought his son a campervan in his early teens (he might have been as young as 10), so they could go visit as a family but when teenage ds got overwhelmed he has somewhere to go with a computer and a kettle to make a cup of tea.

@sashh It's a good idea! Currently at home, if DD is overwhelmed she asks me if she can go and lie on her bed for a bit which I always allow. She usually comes down after 20 minutes or so saying she feels better l. Apparently it's really good that she's learned to self regulate like this at three so I'm feeling positive about that. She has 1-1 support at preschool and they are really good so I'm confident her needs are being met there. It's just talking her out or having people here. I've always been loathe to stick her in front of a tablet but maybe that's me with my notions of what I'd allow a NT child (which we thought she was up until quite recently) to do.

We have been doing some visual timetables for her, and counting down to transitions which all seem to be helping. She's been invited to a small child's party (her only little friend at preschool) at the weekend which she says she wants to go to so I've asked the mum if I can take her to the venue to familiarise her with it first which she's happy with (her little girl is a bit sensory sensitive too so she gets it) and I'm going to try a social story for the first time to see if that helps.

at the idea of 3 yr old autistic kids giving a monkeys about 'ground rules'. If they were capable of fitting in with the adult world in that way it's unlikely they'd get a diagnosis in the first place - at least not through the NHS.

Well yes @RuffleCrow. I've of course tried telling DD not to be so damn autistic all the time and to just bloody well behave but evidently it fell on deaf ears. Defiant little toad.

Sarcasm

Sympathy, OP. It’s really tough, and it feels very isolating. Another vote for getting OT input. I also found the Barnardos Cygnet autism parenting course very useful in understanding more about the (massive) sensory side of autism, and I’m doing the Triple P SEN parenting course at the moment.

You learn a lot on these courses in terms of strategies for helping your child and managing their behaviour but they’re also invaluable for meeting people in the same boat, having some adult conversation with people who understand, and sharing what’s worked for you and what hasn’t.

The other thing that has helped with my feeling of isolation has been going back to work, and I’d highly recommend it if it’s an option for you once your DD starts school. My three days a week doing something non-child related, with like-minded colleagues have been a total sanity-saver and made me feel much more like me again - which also means I feel better able to cope with the ups and downs of home life.