Possible ASD - any advice?

[tigercub50]

DD9 is awaiting a formal assessment for ASD but meanwhile we are really struggling & I would say DH probably has “ compassion fatigue”. We are both guilty of not always empathising but of getting angry, which then makes us feel guilty. She pushes us to the absolute limit. I end up screaming at her ( we even had the neighbours knocking on the wall tonight which made me feel terrible) & DH tends to discuss her behaviour in front of her & go into lecturing mode which doesn’t help, any more than my shouting does. He feels that his relationship with DD is breaking down. We have never smacked her but DH has manhandled her at times as she is totally defiant & he doesn’t know what else to do. She has got physical with him but not with me. The whole thing is incredibly stressful. If DH & I were in the same place we used to be in our marriage we would definitely have split up by now. Thank goodness DH treats me a million times better & we support each other. He has told me he won’t manhandle DD anymore & I am going to try to nip things in the bud so I don’t end up yelling. Any advice very welcome. We are going to get outside help in addition to the assessment. DD is adopted & we can get support from the Family Plus team. Some of her behaviour stems from her growing understanding of her situation, I think

Anyone around?

Have a look at what’s triggering her (maybe not immediate triggers but factors causing the stress to build up). Look at things like schedule, noise levels, textures, unexpected events and (assuming you’re assuming ASC for now) try and smooth those things out for her. So; predictable routine each day (maybe a visual timetable), plenty of warning before the next thing (repeated), sensory factors optimised so she doesn’t get overloaded.

I don’t know as much about attachment difficulties but maybe also look at what’s recommended for both and try to come to your own view on whether it’s autism, poor attachment or both, because I believe that they present quite similarly in many ways.

You havent specified what the behaviour is that you are struggling with

But I would echo pp that sensory overload (noisiness, bright lights, feeling physically crowded, bad smells or physical discomfort such as tight clothes or irritating tags) and being overtired bring out the worse in my DS. Hunge is also a factor

He is usually kept to regular meals and bedtime for this reason.

I also make sure to look out for signs of “overload” which can appear to be disruptive behaviour, but is actually him reacting so he can remove himself from the situation

Also if you or dh are still expecting her to behave in the same way as NT children then you will need to reassess those expectations. My ds is pretty high functioning but I cannot take him to crowded events, this means there are many family / social events I have to just accept are no longer accessible for us because he absolutely will become disruptive or distressed

Also this > We have never smacked her but DH has manhandled her at times as she is totally defiant & he doesn’t know what else to do is unacceptable.

Physically attacking or grabbing children who dont like contact will NOT calm them down.

We haven’t noticed particularly that she doesn’t like contact. He hasn’t got hold of her to calm her down but mostly to get her to move ( sometimes it would be potentially painful/dangerous if she stayed where she was). He is often way better than I am at staying calm & speaking to DD calmly but if she refuses to budge, he has tended to try & pull her away. Sometimes she is physically hurting him & flatly refuses to stop so he has to get her off him somehow. Writing this is upsetting because it makes me realise how much we are trying to deal with. DH has minimised his behaviour ( from guilt) but I have called him on it, just as he calls me on the yelling.

You really should reach out to your local National Autistic Society, they have lots of local groups and organise lectures / sessions for parents to attend to discuss dealing with anger / aggression / meltdowns. It will also be an opportunity to meet other parents in your area who are going through similar

The best advice I can give from my experience is that a calm environment and consistent rules and time keeping help to regulate ds behaviour. You need to start keeping a diary of all incidents and what the circumstances are so you can identify what triggers DD, and try to eliminate it

Funny that overload was mentioned because we had a huge meltdown this afternoon when DD was refusing to tidy her room ( I didn’t really help because I got cross that she was yet again breaking her promise). It never occurred to me that the task was just so overwhelming that she couldn’t cope. Her room is an absolute tip & she hoards big-style. I have tried & tried to encourage her to put stuff away when she’s finished using it but to no avail. I don’t know how she gets into her bed!

As an aside DS is also a bit oppositional as well, sometimes I have to be quite manipulative in the way I phrase things, so if for example we are going on a long drive and I want him to use the toilet first I’ll say dont use the loo just yet I’m going in before we go- suddenly he’ll need the loo.

If you find she is obstructive and oppositional to instruction then you could think about how you phrase things to make it less of a conflict

I'm a parent to two DC with ASD and a toddler going through the terrible 2s. Parenting a child with ASD requires a whole different approach.

I wholly agree with proudthrilledhappy and would also suggest familiarizing yourself with ABA techniques.

Bless her, she says herself that she has “ anger issues”. She has lately told us that she’s angry with her birth Mum & angry with us for adopting her 😥

Ah as for tidying the room maybe breaking the task into small chunks will help, so first ask her to pick up all dirty clothes and put in the wash basket, then pick up all lego, then when that’s done pick up the soft toys (obviously for example)

What is ABA?

Sorry to keep adding on comments Op but if she is angry she may benefit from an outlet, when he was very little DS had a big soft thor hammer that he was encouraged to bash on the floor if he was angry rather than shouting.

He now attends regular martial arts classes and they have been amazing for building his discipline, respect and muscle tone, they are also a good rage outlet!

en.m.wikipedia.org/wiki/Applied_behavior_analysis

Take a look here for information on ABA. The website in general is an excellent resource but it's US based and I expect the U.K. provisions are significantly less.

ABA is not liked by autistic groups, you can read about the controversy surrounding it online, there are many sources.

As well as the autistic support groups like the girl with the curly hair, Tony Attwood, there's support for children with attachment issues from the national association of therapeutic parents, which has a Facebook group 'therapeutic parents' for support and advice.

There are also websites like www.ahaparenting.com/
that can help with ideas

I would also add that you need to change your communication entirely. Tidy up room gets a blank look. Put toys in buckets gets toys put in buckets and we move on to put puzzles in box. Eventually the room is tidied.

Both of my ASD DC struggle a lot with transitions. We have visual charts that they follow for morning, afterschool and bedtime routines. It keeps everything consistent for them as they follow the chart. Once the behavior is regulated you can introduce some flexibility but from what you describe in terms of behavior I think that's way down the road.

Does she have any issues with falling asleep? If so melatonin was extremely effective with DD.

blue That's not my experience. Pretty much every single parent in the three groups I participate in have their DC in ABA programs. The issue is the ABA programs being used in the U.K. are light years behind what is happening here in places like public schools in New Jersey and NYC.

OP The other aspect is that you need a holistic approach. ABA is one part. You also need CBT, OT, speech and probably PT (low muscle coordination is extremely common and needs to be dealt with before musculoskeletal issues develop).

how old is she ? My son is nearly 14, adopted and has ASD, He became very angry and aggressive at around 10, primarily linked to his emotions around being adopted. We had theraputic life story work funded by Adoption Support Fund. It was painful process but he has emerged a very strong young man with a much clearer understanding of how he got where he is.
I would be lowering my expectations of her, think younger, help her tidy her room to get it into an acceptable state, but don't expect her to maintain it herself or ask her to promise to. Develop very clear routines for her so she knows what to expect. My son is much more settled now, but we have worked hard to develop a way of living which accommodates his autism. But we still funtion on a no surprises basis, for example we already have the whole of the school summer holiday and October half term planned out. The most I would ever surprise him with is a cinema trip and even that can throw him. We have a calendar that everything gets written on and a big weekly planner so he knows exactly where he is and whats coming. Its like a big security blanket.

Look for her triggers, do her meltdowns happen at the same point in the day, after school, homework, bedtime, is she tired, hungry, is she letting rip after keeping herself in check all day in school? You need to help her regulate herself. My son needs a lot of physical exercise to keep him even remotely in control. He also finds writing lists very comforting, I keep him supplied with nice notebooks, they are full of drivel but it works for him, What calms her down?
Look into sensory processing disorder.
I think you need to be tackling this on two fronts, getting the diagnosis, and looking at what her emotions are around being adopted.

There’s some really good advice here from Ted27. You might want to post this on the Adoption board too.

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you've bumped this up twice now, can you be say a bit more about what you are looking for ?

It sounds like there's a lot going on for her, being adopted and having ASD. My son has a diagnosis and when he was much younger, before we knew, we struggled to understand his behaviour and as a result OH and I argued constantly about the best way to handle him. We blamed each others parenting styles. Once we were more in the picture about his SEN it got easier to understand him. We spent time figuring out the triggers for his meltdowns, and found that speech and language assessment was really helpful as they were able to explain his issues with social communication and with processing of language (he had expressive and receptive language delay). Using visual stories, social stories, visual timetables for outings / trips / holidays and weekly for our routine, really helped calm him and reduced the difficult behaviour. It helps to realise that the behaviour is not deliberate or naughty.

OH found it helpful to read books about ASD (there are specific ones about girls, also look up The Girl With the Curly Hair project) - I found it helpful to go on ASD/Autism parent courses and network with other families. Getting the diagnosis helped with that as I was given access to support I wouldn't have had previously.