Female (9 years): ASC and Pathological Demand Avoidance
VB; PA; SI; PD;T;
Male (9 years): Down Syndrome, ID and hearing impairment
Female (12 years): Moderate ID, Reactive Attachment Disorder and William’s syndrome
PA; SI; PD;
Female (10 years): ASC, Foetal Valproate Syndrome and ID
VB; PA; T.
Male (10 years): Down Syndrome, ID, hearing impairment, ASC
VB; PA; SI; T;
Male (9 years): ASC
VB; PA; PD; T.
Male (10 years): ASC
VB; PA; SI; T.
Male (5 years): ASC, ID and epilepsy
VB; PA; SI; T.
Female (4 years): Global developmental delay, ASC and chromosome deletion long arm C10
Male (12 years): ASC and severe ID
VB; PA; SI; T;
10 year old male with ASC and severe ID
VB; PA; SI; T.
QoL for Caregivers and Family
Rights respected, Hmm, this is what I deem important first, yes absolutely (Participant-9)
Rights being respected (laughing) I couldn’t give a shit what other people think! (Participant-1).
Being invited to lots of birthday parties once upon a time would have been something I would have wanted and expected but now it’s being realistic and that’s beyond something he could really cope with (Participant-10).
That is very understandable. It seems where you placed that area really reflects how difficult things are. But I get the feeling there is some sadness or frustration? That in an ideal world you might want something different? (Researcher).
This one for how actually is and here for how would want it to be (eight)
We never go out together and that is important. That’s gone and has changed our lives dramatically. A massive, massive loss. (Participant-11)
Personal development, that’s what life is all about really isn’t it and in amongst all the bad things that have happened to us I have a little niche. (Participant-3)
Everyone in family accessing and being part of and included in things, just because he’s got a disability I don’t feel we should be excluded from anything I don’t think he should have to fit in necessarily with everyone else, why should he, why can’t they adapt why has he got to change? (Participant-2)
QoL for Children
What’s going on?
She does see things differently to how we see them, and she puts things into perspective differently and it is quite hard to figure out what’s going on up there. (Particpant-4a).
I would say she enjoys it but doesn’t understand the significance and importance of it so these things are all the things that are hugely important to her but she doesn’t know (Particpant-3).
Actually because in some ways she does like to be in, to have things a certain way, and in certain places and times and I suppose that is actually about her feeling in control of certain situations and so actually thinking about it I would bring that there. (Participant-9).
BTC for Child
Does do that
It’s reassuring actually because you have created a list of several challenging behaviors and when you see ones she does you obviously feel there are other children doing those things as well. (Participant-9).
Just naughty children
Sometimes I’m in tears when we’re at home and I’m thinking I wish we had of gone but my husband’s saying you know what you’d have been like – would have been on edge. (Participant-2).
Another mum turned round and called him an effing little retard in my hearing. I cried for a week (Participant-5).
For us it’s negative
Even if we could move it [BTC] to half the table, at least I could put some of the green [QoL] things back on. (Participant-3).
Not get into that escalation point where he’s trying to scratch or kick you, his life would improve dramatically, and so would ours. (Participant-11).
Adaptive Behavior for Child
Has it in him
It’s always what the child isn’t doing or does badly, they don’t say, like when you pick them up from school its always like he hit this child or he didn’t go to assembly. Not he spent this long in assembly or he did this today and everything, I don’t get any of that I always get the bad point. (Participant-2).
Good at that
Struggling to understand, just make sense of life, but of course he can’t make sense of life because of his autism, so I do understand, but it’s hard. (Participant-6).
For others, reflecting on positive aspects of their child’s behavior gave voice to a more balanced and hopeful perspective:
And as much as it’s difficult with him doing all this touching I am proud of how he is and that he’s loving and smiley most the time. (Participant-8).
Participants often appeared re-energised and motivated when identifying these behaviors/characteristics and the interviewer was able to share in the joy and enthusiasm that was generated:
Friendly, very, right up there. We went for a swimming lesson and the bloke said he’s very sociable isn’t he?! Wanted to say hello to everyone in the pool. That’s his main strength being friendly (Participant-2).
We’re seeing real progress she’s able to put a toothbrush into her mouth and able to spoon-feed. (Participant-9).
That’s incredible, so important to be aware of that as something to build on! (Researcher).
We could sit at a table and have a meal, if we do that that’s bringing a family component into her life so she’s going to feel safe because knows a family that loves her and that would build the relationships in turn (Participant-3).
If relationships and understanding for sharing then it would deal with his need to take it out on her or whatever and so her relationship with him would be better because she wouldn’t feel that scared of him so then maybe she would share better as well herself and it all goes round full circle (Participant-7).
Did that right
He loves watching me cook and he got the masher out the drawer and one of those moments and he started mashing for me and I got him to hold it and that and all off his own back (Participant-11).
I’ll help a bit and give him encouragement and motivation and talk to him with respect, you can avoid it. (Participant-5).
The more you do take him out really the more you extinguish that kind of need. I do see a link between the two, the more you can give him those experiences the less there seems to be the need [for BTC]. (Participant-10).
You think “yes I’ve done something right” because an ASD child never tells you when you’re doing something well. (Participant-1)
End of my tether
I do shout when at the end of my tether, when gone on all day and I’m like I’ve had enough now and “stop it!” (Participant-2).
Horrible feeling but that completely broke my heart and made me feel awful and I certainly haven’t said it to many people but just couldn’t be around him. (Participant-7)
A kind of spiral
I can remember doing it because he got into this kind of spiral. (Participant-10).
When child just full of rage and not responding to you it does all go pear shaped and wave arms about and end up threatening and that’s definitely the biggest. (Participant-7).
I will shout at him but sometimes shouting doesn’t work because that’s why he shouts back. (Participant-6).
For some, these responses evidently arose in the context of broader demands and stresses of caring in an unsupportive community:
So she started pulling their hair and the child got very upset, as did the mother of course, because she wouldn’t let go of her hair, and then we became negative with her because we were in front of other people and you want to be seen to be taking a stand. (Participant-9)
The others are not huge emotional expenses for me but I don’t want to shout or argue with her, I end up feeling shit afterwards. Why should I be arguing and shouting at a 12-year old? I don’t want to do that (Participant-3).
Goal might be to spend a happy hour at a children’s birthday party, you almost need to break down what are the things that are required to have that success? And talk about that. Those kinds of conversations I find really useful. What’s needed coz then you feel successful because you’ve only set yourself up for that. (Participant-9)