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?

I actually think that the system needs there to be lots of parents who won't fight. If everyone was assertive and took them to tribunal SEN provision would be swamped and the whole thing would fall to pieces.

It is an appallingly unfair system in which the child's provision is determined by the parents' ability to advocate for them.

I think you should also ask this question to parents with children who are disabled but NOT autistic. I am sure the themes of lack of support would be just as strong but it would be very interesting to see if there is a consistent difference in replies. Someone suggested that kids with Down Syndrome get a lot more support but I'd like to know the evidence. Quite a few kids with DS also have ASC as well and some have severely challenging behaviour. I don't think life is easy for them and I don't see them getting any more therapies or respite than anyone else!

My bugbears are about noone making a decision as to whether my son has ASC and his behaviour and poor sleep. He is at special school so the fights with the LEA and tribunals are mercifully absent. However, fights to get respite have been dreadful

My DS1 has mild ASD and I find it really frustrating that DS2 and I miss out on a lot of family gatherings because they don't want him (or DH who has AS) around. Of course DS1 and DH are quite glad they don't have to go but DS2 and I would quite like to.

My friend's little boy has DS and she said that in some ways it was easier because she had a diagnosis from birth so she didn't have the pre-diagnosis stage where you think you are going mad and people blame your parenting skills. Also it's easier finding support groups etc. The disadvantage is that because everyone knows what DS is a lot of people assume things about her little boy before they have met him.

My DS still doesn't have any diagnosis - he obviously has some genetic syndrome but as yet it is unnamed - but the sudden shock realisation at birth that something terrible was wrong with him was something I have never recovered from. I have noticed this trauma reflected in other parents who have a sudden diagnosis. It is a different experience than a delayed dx, but I am not sure anyone could say whether it is harder or easier.

In fact I'm not sure it's helpful to view one diagnosis as 'harder' than another. Surely it is more to do with how that disability presents itself and what coping strategies a family has, including money?

Donkeyderby
I really I don't mean harder in an emotional sense, not at all, the last thing I would want to do is create some sort of hierarchy, that's not what I am doing, definitely not.
What I am trying to understand is the process of diagnosis in relation to access to services, openess of HV or doctors to refer children when the parents sense their is something different about their child. I have heard a lot of horror stories about parents being fobbed off and of the attitude amongst some 'experts' being one of dismissal of parents fears or worries with the watchful wait period extending for years when all indications point to ASD.

Really I wouldn't dream of saying that one families diagnosis is harder emotionally than anothers, that's the furthest thing from my mind after reading these posts. I hope that's not how it comes across.
You have all been so open I really really appreciate it.

"Someone suggested that kids with Down Syndrome get a lot more support but I'd like to know the evidence."

that was me, but I did say I've only known one parent in real life

I don't think the kids are automatically given more support, it was my impression that the parents were given more support - that is that they got some, as opposed to nothing at all, lol

partly because it's known from very early on that there's an issue - there's an assumption for instance that there will be a need for educational support, many children with AS start education before diagnosis, so of course there's no such assumption

there aren't any support groups for - I think there's something wrong with my toddler, but I'm not sure what...

while you're waiting for a diagnosis - you're in limbo as far as support goes and for me he was 13 before he had anything that would entitle him officially to anything

I wasn't at all suggesting that it was easier if your child had down's, I know it's a similar state of having to fight for everything - I know my friend had to fight hard to get professionals to treat him as though he was capable of progressing rather than just assuming he wouldn't, which is horrible

but if studies show that parents are less stressed it might be something to do with early diagnosis and the fact that they're never going to have to deal with the - he seems fine to me attitude, but it was just me musing really

oh and as well - that was all from the point of view that it isn't actually living with my child that causes me the most stress, but dealing with everything else that does

it genuinely wasn't meant as I think it's easier for parent's of children with down's, just different because it's not the same process at all and maybe it's that process that causes masses of stress

I've waffled on loads in this thread haven't I? sorry

No tabulahrasa you've been great and given an insight into your story, there's nothing wrong with that, it's totally valid.
The research indicates that parents with a child with DS are less stressed than parents of a child with ASD. There could be lots of reasons for this although no one is suggesting that parents of children with a DS child are not stressed either!
It's just that I am interested in the ASD side of things as that's what my course is about.
As far as I can see all parents are stressed to one degree or another!
Thanks Tabulahrasa and all the other parents who have contributed.

I think everyone has already listed the stresses

Biggest stress for me is fighting... Fighting to get ds2 the help he needs, fighting to have got a dx because you knew something wasn't right and it wasn't your parenting... Fighting to get school to recognise the dx rather than them continually saying ' I see no issues' just because he does rock in the corner making repetative noises ( well not for the majority of the time)... Fighting to educate the educators .. Because what your telling me now about his behaviour I'd directly linked to his asd!.. He is not being a pain in the butt for fun!

You get the drift.. Everything is like walking through treacle.. And the only person who actually gives a damn is the parents!

The destruction. The tantrums. A big 4 stone boy climbing on me all the time - and climbing up behind me on the sofa (Just had to snarl at him for this!) The sheer logistics of going anywhere. The effect of the slightest change in general routine, including between weekdays and weekends...

Top stresses:

1. Professionals - especially those who actively collude and lie (including to a tribunal) to deny essential services to save money. The injustice of it, the way the system is stacked against parents, that it is in the interests of local authorities to delay provision or under provide knowing they put off spending until next year - and even if caught out that they will only be asked to pay from then on there will be no punishment for being negligent for the past delay. I can honestly say every single professional from the local authority education dept including autism teachers made my life worse not better. Dealing with them was more stressful than the diagnosis. I still feel physically sick when the post comes in case they try and take our provision won at tribunal off us.

1. Money. I used to earn a really good professional wage and so did DH. Now we earn 2 crappy parttime wages, our outgoings are much higher (special buggy, nappies, petrol to appointments, therapy, legal costs). We have no savings, no pension and now face a life on the breadline. We may to downsize our house - although our other 2 boys already share a room.

1. Behaviour. Worried DS will soon be too big for me to handle when he is lashing out.

1. Guilt - because he is so difficult to engage and therefore I let him sit on the computer far too much, then feel bad about it

1. Sleep deprivation. We only average 5 hours a night.

1. Outings - other peoples reactions

1. That DH & I never have any time for each other and that we'll have no marriage left.

1. That I never spend enough time with my other children.

'I still feel physically sick when the post comes'

OMG I have this too. I read all the post marks on letters before I open them so I can't be caught by surprise by one from the LA. If I DO get one from the LA (and I do quite frequently) I usually have to wait a couple of days, get some wine inside me before I feel strong enough to open it.

And I shake when I do so. It is hardly ever good news, and even when it is, there are usually mistakes, innaccuracies, obvious misunderstandings. It usually means the next fortnight of emotional back and forth emails or urgent meetings which require me to find out of nowhere childcare for a 2yr old and often also my ASD 4yr old.

I'm always waiting for someone to pull the rug from under us too.

The fight for provision- esp education. It's horrible when you're child needs 1:1 and you are fobbed off for so long as education departments just want to save money.

other people judging yourself and your child all the time. honestly if i had a pound for every time a member of public remarked ds needs a good smack/hiding...

lack of sleep

''poo'' smearing whilst in bed

having to explain situation god knows how many times to different professionals and then when you go for another appointment member of staff is sick, on holiday, left so back to square one.

taking ds out full stop he can get out of any buggy, runs off or lies on floor. has no sense of danger will try and get in roads. wont walk on reigns. he is size of a five year old and my back is honestly getting worse by the day.

the horrible feeling your child is not wanted at nursery etc.. other parents ignore you, your child is NEVER invited to parties etc..

nthe constant looks of disproval, shaking of heads, glares etc.. on public transport and in shops, cafes etc...

how things get broken so easily by ds, a tv, buggies,carpets, bedding, blinds and curtains, toys, an oven door, a tv cabinet...

lack of social life and partner. i love ds so much but can't imagine any man will take us on.

dropped by other mum's when ds's problems became obvious :(

isolation/loneliness

Oooh the pulling the rug from under your feet thing and the Reading the postmark on the envelope and sitting down to read the content thing!

Agree with those as well

Can I just say at this point that this thread has really opened my eyes not just as a student but also as a mother. I just had no idea how many issues there are in this area.
There has got to be some way of getting the message out there, most people like me are just plain ignorant.
I know it's a huge generalisation but do you want your child in mainstream ed or would your rather they went to an ABA school if it was available and ABA worked for your child?

I've only just read this thread, so I know I'm making comments others have, for me what made it worse was being patted on the head, 'yes I am sure boys are slower than girls, and these things sort themselves out, and there is a wide range amongst children, BUT he is widely outside the range of 'normal'! So just bloody look at him and you will see.

Professionals who don't do what they say are a nightmare. We just wanted to be kept in touch, 'what are you doing, when will it be done by, who is doing it?' Always, always come when you say you will, and contact us if you will be late, we do have lives you know!

I also keep very good records, I know who said what, and when, and I have found my records are better than the professionals on occasions. Also quoting the relevant legislation does seem to put a rocked up people sometimes.

(I should add I lecture in Social Work for a University, and my expereinces as parent carer, and carer for my husband form a really good basis for my work with students! )

Our ds will be in mainstream,(for time being) but that's cos we have found one that appears to 'get' him and will put in place what he needs. He may end up in unit or special school later on.

Things that are stressors are people not getting it, they often think that your child is okay and tell you this very often, maybe to make you feel better, but when you tell them it actually makes it worse they don't stop. ASD kids are like other kids sometimes but as someone has already pointed out, often their behaviours dominate their lives unlike other kids. I have two other children and see huge differences between my child with ASD and them, and this is both brilliant and painful at the same time. My son doesn't want to go to bed, talks constantly and often it is him repeating the same thing, he can be aggressive, he is 5 and struggles with dressing himself (mainly because he has no interest in it). I feel very stressed often about his lack of empathy for others and his disregard for anyone elses feelings (unlike my other children)he can be hyper active at times and in truth the medical profession know all this (and it meets the criteria for a diagnosis) but they do not know how to change any of it. There are some positives obviously too.

Oh and I forgot one big thing, having no aversion to his own poo...that can make life very tough at times...

This is easy for me: powerlessness of it all. I am one of those people who can cope with anything as long as they have some power to change it- when we were broke taking 2 jobs, selling up and moving- whatever.

I cannot change the ASD or the things it brings with it and that I find incredibly hard and even damaging, to the point where I was making myself very ill.

I agree so much with a couple of others too...."not invited to parties" and will there be anything left of my marriage by the time he has grown up enough to manage some of the worst aspects of his behaviour.

Also not wanting to take him anywhere or have people round because they are often surprised by his behaviour, this of course, leads to isolation.

And noone should be feeling superior about their 'normal' children eating well. My 'normal' children eat well, I never had to work at it or coax them they just did. My ASD child rejects most things and eats a tiny limited range of foods which cause constipation and I constantly stress about him not getting enough vitamins and minerals. My other children try to dress themselves and they kiss and hug one another, they look me in the eye and crawl up on my lap for a hug.

I try not to compare them but after 3 or so years of it being suggested it was my crappy skills in the kitchen, my lack of play skills, my lack of bedtime routine, my lack of showing him how to dress, etc etc I observe these comparisons with a keen eye and I know I have been the same parent to all my children.

I'll stop hogging the board now but I just wanted to say that our world works in in strange ways with a very twisted set of values. My 'normal' children are quite beautiful and cute and bright so they copy all the time and do the most clever and amazing things....my input in this has been minimal. People think they are wonderful.My ASD child is socially inappropriate, sometimes agressive and often quite difficult and my input has been MASSIVE trying hard to turn all that around. Noone with a child who is 'different' deserves the looks, whispers, comments and unwanted advice that comes along with parenting a child with ASD. My point is, you can't take credit for so called normal, beautiful kids when they just'got it' and you don't deserve criticism for the child that 'doesn't get it'.

Slinky I 'probably' not want my ds to attend an ABA school because there are few that I feel my ds would fit in with because of where he is on the spectrum, and the one or two that WOULD possibly be suitable are too far away.

However, what I stongly believe is needed is ABA techniques more understood, accepted and embraced in non-ABA settings.

It seems odd to me that mainstream schools use ABA techniques to control behaviour and management in the classrooms, as they are deemed the best way to get children to do what is needed of them, and yet fail to extrapolate that to their learning and education.

I suppose this is because negative behaviour is a pita for schools, but simple 'non-learning' is not!?