Parents of Children with ASD, What stresses you out?

[Slinkysista]

Hi
Don't know if I am allowed to do this but here goes anyway, I am writing up a project for university on the topic of stressors for parents of children with ASD. Most of what I've read concerns the behavioural problems associated with ASD, however I wanted to get some ideas from people living with a child with ASD. Hope this doesn't upset anyone I am genuinely interested. What stresses you out most?

Uncertainty about the future, no-one can really give you a prognosis.

In the past 18 months we've been told everything from he's unlikely to talk, he has severe learning difficulties and will need special school to he will live independently, will be able to mainstream, can follow undifferentiated curriculum. You don't know who you can trust because everyone comes with their own agenda. It is incredibly isolating & scary. Not knowing what do to & who to turn to for advice. The fear of listening to the wrong person & completely fucking up.

Dealing with the day to day stuff can be hard - being ignored, breaking stuff, tantrums, refusals, phobias - but nothing compared to dealing with other people.

People with NT children who say 'oh yes my ds did that' .. I have two NT children I know what parenting a NT child is like - it is easy frankly. People who treat my son like he is a different species ... 'oh yes they do do that don't they ' .... I wish they would fuck off.

The huge financial effects - 2/3rd of our income is spent on fucking autism & we have a low income because we have a disabled child. We will be poor forever.

Not only have we had to re-asses & let go of our aspirations for our child we've also had to come to terms with the fact that our lives are much smaller than they were before. We have far fewer choices.

The fact than in some ways despite his progress & the time/money/worry we've poured into him he seems worse now than he did a year ago - his behaviour makes him stick out. No-one really care much about a 3yo tantrumming on the ground, a big 4yo draws much more attention. It makes me not want to go out.

as far as I know there only is one ABA school in Scotland (where I am) so I honestly don't know that much about them

I know that the mainstream secondary my school is at is not where he should be, he just about copes, but it's not ideal

he's part of a supervised nurture group at break and lunchtime - to minimize bullying opportunity (dead inclusive eh?)

He does well at science, IT and maths - partly because that's just what he's better at, but also the teaching style suits him

he struggles with languages, so he's in bottom set classes - where there are massive issues with behaviour, they're expected to do much more co-operative learning, both of which then impact on his progress which is poor at the best of times

his school are very inflexible and refuse to admit that he needs support in a lot of areas because they don't see how stressed he is - he keeps that for at home

he's clever, he wants to learn - but he hates school

I've seen some fantastic mainstreams with attached units for autism (I was until very recently a student teacher) which was where I was trying to get him into - but because he was still without a diagnosis and the ed psych recommended mainstream he had no chance of getting in

some of them were just so right for him, lessons in mainstream classes but they could be flexible about teaching him in a base if certain classes were causing the pupils stress, or even just certain topics so that pupils could dip in and out of subjects they were getting upset about (sex ed for instance), named desks , drawers and extra copies of their timetables, outdoor activities one afternoon a month (team building) extra life skills lessons, full time trained staff specialising in autism... (sighs wistfully)

I'd still like for him to go to one of the schools I've seen, but to do that I need to get his school to agree that they're not meeting his needs, they think they are or face a massive battle that I might not win anyway

at the moment he's actually the happiest he's ever been so I'm reluctant to kick up a big fuss and it's a case of riding it out unless something goes wrong

I suppose what I was saying was that there shouldn't be a seperate 'thing' called ABA, there should be good evidence-based practice in all schools and classrooms, focussing on high motivation and individualised learning which is what schools are supposed to be doing anyway, and, if done properly would look a hell of a lot like ABA.

Yet ABA is held up to be something quite evil. It's quite bizzare!

There is not one single governmnet policy document or guideline for which ABA would not fit perfectly.

Evidence based practice
Working in partnership with parents
Multi-disciplinary approach
Multi-agency partnership
Formative and summative assessment
Assessment for Learning
Sound data
Positive reinforcement
Individualised learning
Home-school communication
Classroom management
Positive behavioural support
Child Initiated Learning
Peer tutoring
Early Intervention
Transparancy
SEAL
PE
Healthy Schools

That's from the top of my head but I have spent MONTHS researching what the LA or schools reasons can possibly be for NOT engaging with our ABA programme. AFIACS it boils down simply to ignorance, which, ultimately goes against much of Teachers Professional Code of Practice to be open to new ideas, coaching and mentoring, take on board prior learning etc etc.

As I understand it there are a number of reasons for this.

1. ABA is currently delivered in many instances by unqualified teachers, which offends the professionalism of qualified teachers.

2. The challenge to teachers wrt to them following their code of practice can only be instigated by their bosses, not parents (for good reason) or anyone else. Unfortunately their bosses are from the same culture of ignorance.

3. The perception that ABA is expensive/luxury item. It IS, but only because parents have to source it from OUTSIDE the LA and school. If it was embedded in the general culture of teaching it would cost the same.

4. A really bizzare misconception that ABA does not teach a child to generalise and a wierdly held belief that to do so, they have to be allowed to learn by submerging them into a mainstream environment where they will learn incidentally. This is odd, because it fails to recognise that if a child with ASD could learn incidentally, they wouldn't have ASD. It also fails to acknowledge that children with ASD CAN learn to generalise, but they have to be taught this skill specifically, which ABA does. This is my biggest head against a brick wall thing and IMO is what needs researching and challenging the most!

Can't disagree with anyone's points. Just wanted to emphasise how awful it is when professionals disbelieve you, say 'all boys are like that' or similar rubbish, or insinuate that if only you did something different, the problems would magically vanish.

It's even worse pre-diagnosis because you've already equally stressed about all three possibilities 1. something serious is affecting with your child 2. you're going mad and imagining it all 3. you're an incredibly bad parent

The stress of being told ..."he'll just grow out of it..." pre-diagnosis. He didn't.

The fear for the future. He's high functioning....not in a genius way but in the fact that his reading is good and he is really arty BUT, his social skills are utterly non-existent. There's no therapy or help with that only at school.

Will he be able to form relationships or will he be lonely and living in a warden-controlled house. Will he have a girlfriend (or boyfriend?!) will he be loved by anyone other than is mum?

I don't have big wishes for him but a life spent alone, trying to "fit in" (cause he so wants to!) is a desperate thought that keeps me awake at night.

Anyone else feel this?

Wendihouse22 - did you read my post ? That is EXACTLY how I feel - exactly.

Ah Toppy.... you know my nightmare then!

Mine's an only child too so no siblings. Not that I'd expect them to be responsible for their brothers' well being but, it would be lovely to know there was someone....

I used to worry that he'd not live independently, but the older he gets the more it seems possible - I can't at the moment see any reason why he won't (mine I mean), although maybe a bit older than normal

he suddenly does have friends, ok it's not many, but it's a lot better than none, lol

a relationship? I don't know about that one yet...I really don't, I don't see how it could possibly work, we've had some pretty major issues round sex education which I don't even really know where they cam from, he seems to view sex and nudity as wrong somehow - I'm hoping that's just immaturity, but I don't know

I wouldn't want an ABA school at primary as I think he will do better with 1:1 ABA support in mainstream - those peers are pretty useful therapy models. Even at 4 (with little speech and severe delays) he is spending 80% of his time with typical peers with support.

I might think about it for secondary if he does not make the progress which would make mainstream suitable - I think he would need to move a long way up the spectrum to cope with mainstream secondary - but with ABA that kind of progress is possible for many children so I hope he will not need it!

Agnesdipesto....I agree, those peers make for good "education". My son's in mainstream primary with 25 hrs assistance. But, and this is the sad bit, bright as he is, they're saying he will not "survive" mainstream secondary so.....we're no having to look as secondary with a special needs unit attached. There's an excellent one about 20 miles from us. However, my son will take some convincing that he can't go with all of his "friends" to the secondary over the road from us!!

Tabulahrasa..... it's SO good to hear you say that. Am hoping that with lots of help, my son will learn to cope with his differences and form relationships and maybe live moderately independently. As you say, perhaps later than typically but.....eventually. I'm 48 NOW! So, I hope I'll be here for as long as I can help him to do this.

the friends thing, he's always wanted them, he'd like to be quite social, but he never really managed it and although I think he's wonderful in lots of ways - I could always see why other children were put off add that to him not really knowing what to do and he was just desperately lonely

I'd hoped that at some point he'd find people who were willing to overlook the many ways, lol, in which he's annoying and see the good bits though I must admit I expected it to be after he left school tbh, but all of a sudden he's managed to find some

he is massively immature emotionally, but he has changed since he started secondary school, not as fast as his peers, but still it has happened, so that makes me think that he'll carry on doing that...

practically I've always worried about his organizational skills and his obsessiveness meaning he won't be able to be independent, but I suddenly realized that he's a teenage boy, lol, he's supposed to want to play the x-box constantly and not care if his clothes are dirty

he can cook (well ok it's a bit hit and miss sometimes, but he can feed himself) he knows the basics of housework, he's fantastic with money because he likes it, lol, all in he's actually doing better at that stuff than most people his age - because I've been so worried he wouldn't that I've spent ages doing that sort of thing with him - on boxing day my 17 year old nephew was being teased a bit about not being able to even make a pot noodle, no reason he can't, he's just always had his mum there to do it and we were talking about teenage boys, it made me realise that actually mine is doing ok

My brother was offically diagnosed with asd at age 22, my mum initally asked if he was autistic when he was 6! It was whilst away at a camphill college that he was dx. The doctors he saw said there was no doubt at all. With hindsight maybe she didn't push hard enough but in all honesty she was just worn down by the system.

I'd like to say that as this was 20 years ago times have changed, but sadly the reality is there are many many kids out there who are not getting the help they need.

As a techer I see it in kids at school and it's heartbreaking. In reality unless parents are determined and pursue things to the n'th degree, all too often, the help is not forthcoming.

My son was refered to a 'social and communication' panel at age 2.10. He is scheduled to be 'dicussed' at panel this July 2011. He will be 4.2 then so 1 year and 4 months and that just to be discussed after a referal. It's not a quick process.

This has been a very interesting thread.

I have read it all, but over a few days, as time has permitted, so apologies if I repeat anything.

we looked at a LOT of schools for dd1, and a lot of different types of school. given that we have moved house 3 times during her (so far short) school life, and have minutely examnined the schools in each area each time, it really does add up. we have seen schools that were not the right set-up, but had the right attitude, schools that had the right set up but the wrong attitude, you name it.

dd1 has attended: private nursery attached ot a private school; ms pre-school; specialist pre-school; now she is at an ABA school (and she is only 6!)

what we have found out along the way is: ther eis no one place that is perfect. even where she is now, which is absolutely ace, and she is leaping ahead, has it's drawbacks.

we looked at a ms school where the head was absolutely fab. dd1 would have fitted in well, and head was happy to have ABA in the classroom. but at the time, dd1 was scared of children. there was no way that school woudl work for her (it also had mixed years, so at just 4 dd1 would have been mixing with children ranging up to 7.) it would have terrified her, leading to her shutting herself off, and all the ABA woudl have been able to do would have been to reach ehr - no energy left for learning.

the ASD special school was similarly awful for her. no consideration of what dd1's actual needs were - everything was geared towrds getting her to not be disruptive ina ms classroom, and not really that bothered by whether she was actually learning or not.

I have found that a lot of the time, the reason given for no learnign outcomes being achieved is "well, it is vey hard ot tell what each child can achieve, they are all so different" subtext: your child clearly has great learning difficulites, it isn't anything we are doing wrong. the expectations are not there. not in the same way they will be for dd2.

we looked at lots of ABA schools - probably half a dozen or so. none of them were perfect either. one clearly had the worng peer group for dd1. one had no peer group for her (she was 4 at tthe time, their next youngest pupil was 10), and htis bohtered them (didn't actually bother me, but hey, it's their choice).

one seemed ot ahve it all - well established, a good peer group, years of teaching experience (educationally, not ABA-wise). but it felt just like all those ms schools we had seen - not much interest in dd1 as a person.

where dd1 is now, is not perfect either. it is great, and they do their best. it is tiny (3 pupils!) and no peer group for dd1 (dd1 is 6, next pupil is 9, and other one is 15; she is the only girl) but i really don't think this is the end of the world for dd1. she needed somewhere that was going to give her space, and space is what she has.

at times I have wondered whether we have been very pfb about our pursuit for a school for dd1.

but then, she is my pfb. and I haven't had the chance ot relax that pfb-ness that most parents get, becasue I have had to continue to fully protect her in so many ways.

maybe what we did was ot chase the best education possible for dd1, rather than a "suitable" one, but then we were able to do this, because the so-called "suitable" ones weren't suitable for dd1, iyswim? the only time we made a choice that could be considered precious, and in pursuit of gold-standard (for dd1) was right at the end, when we were choosing between ABA schools. the rest was a no-brainer, for us and her.

the more space we have given dd1, by taking her out of the real world (to an extent - of course her school make sure she is taking part in real life, as do we!), the more she has expanded to fill the space we have given her. if we had left her in a ms school to meet challenges, and learn to face the world, she woudl have withdrawn more and more, and ended up more autistic than when she started.

so, ABA works for dd1. and ABA school works ofr dd1 for now. she has done brilliantly there, so much so that it seems she may be outgrowing it slightly. but that is because it is a new school, with little experience of the teaching side, not because she is ready to go into ms. and what we have ended up with is a school which is happy to grow with us - we are all learning together. sometimes we think the academic side is not highlighted enough, and so we have had am eeting with the school, and they are now re-focussing and have re-drawn the timetable to adjust to this.

Very interesting thread of the past!

There are many positives to parenting a child with Autism. My DS is my 4th child, he was 3 when i realised something was wrong. I had already been a parent for 19yrs, so would consider myself an experienced parent but i knew nothing about ASD until 3 yrs ago! My DS now 7 is very challenging. He attends SS.
I have learnt the meaning of true unconditional love(though I LOVE ALL MY DC)
I have learnt how to seperate the behaviour from the child.
I have learnt understanding of difference
I have learnt to function on 3, 4 or 5 hrs sleep!
I have learnt i am my sons proffessionial...The proffessionials i have met have varied from amazing to totally stupid.
I have learnt SEN law inside out!
I learnt how to play again.
I have skin as thick as a rhinos.
Im a total bore regarding schools/LEA/DLA/ASD/ADHD/SN...
I have learnt not to judge.
I learnt very early on i would have to fight for my DS at every level,all time just to access the most basic services and Education.
The most valuable thing i have learnt is i cant control what life throws at me but i can control how i deal with it...
Stay positive or go mad- you do always have the choice!!!

At last! A zombie thread well worth reading again Starlight.

Great thread star.

For me it is bloody family and there refusal to accept that Dd3 is not a spoilt baby but a highly intelligent 9 yr old who has Asd and needs their understanding and support.

Toppy
That post definitely struck a chord with me, my DD 2.6 is just starting to see salt and due to see paediatric doctor. She has no clear words yet despite great efforts over the last 6months in particular. She has no formal dx yet but def has problems and a severe communication disorder has been suggested. it does cause a lot of stress wondering what the future holds for your little one. Will she be able to attend MS school? Will she catch up more or drift further away from her classmates abilities. Will she ever start talking? It is a constant worry.

So many things (my DS has Asperger's Syndrome and extreme behavioural issues).

The isolation is the worst for me and, of course, for DS.

Never being able to join in extra curricular classes or activities, because DS cannot cope with them and kicks off. I was never able to bring him to toddler groups or have that easy social relationship with other parents when he was little (he is now 7). Friends' children go to swimming and football and music lessons, but DS is unable to cope with these situations, so misses out on so much . He also attends a specialist unit, so we don't have many parties and play dates to go to. He has only ever been invited to one play date, in fact .

Also, even if we were included in things it would be very hard to go. A few nice friends will ring up and say 'we are all meeting up with our kids for a picnic or party etc' but we rarely go, as DS cannot cope with large groups of people and I cannot leave him unsupervised for a minute.

Also, the ostracisation and judging are quite soul destroying. Other parents are often horrible. DS is very big for his age, so seems older than 7, and is also very articulate, so looks 'normal' (sorry for using that word, but you know what I mean'). Other adults will often be very nasty to him (and me) without stopping for a moment to question why this enormous child is behaving badly. It seems that many grown adults find it easier to judge a child as 'naughty' or 'badly brought up' than to consider for a minute that they may have developmental issues.