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?

lots of things

Going out with my dd's (without my husband helping).

Having to fight for help (ocupational therapy, speech therapy, schooling).

People/other parents judging you and your parenting skills.

Having to plan every little trip, every little change in routine and every new situation that your child may react too.

Lack of sleep.

Not knowing how your child is going to react to different things each day.

Not being able to have a social life as people tend to avoid you (and your children) as they don't know what to say to you.

Also the though of how they will cope as they get older (the not knowing).

I could go on but i'm sure there are people with other answers to your question.

Hope that helps .

exactly the same as Marne, I started typing my list but it was just the same!

also, not being able to understand what DD wants, most of the time!

and standing out loads from the other parents, at mainstream nursery.

and getting DD to eat healthily/feed herself/use toilet

When people try to tell me there is nothing wrong with my child and justify it by saying that other children display similar behaviours. They completely miss the point that in children with ASD these behaviours dominate their lives and there are lots of them present all at the same time.

It's stressful when other parents do it but ten times worse when professionals do it.

Same as for Marne - also the destructiveness, (toys, household things, bedroom furniture, sofas, costs of redecoration etc - v stressful), sudden and violent tantrums for unexpected/unexplained reason, trying to work with and give appropriate attention to NT sibs, trying to maintain some semblance of a couple relationship, the inability to explain the day to day business of living to them in a way that they will understand, most of all the worry about what will happen to them when we are no longer around.

the hting I find most stressful is tryig to keep on top of every little variable that might stress or upset dd1. trying to keep an eye on everything that is happening, all of the time - is the background noise too luod, is the light too bright, is it too smelly, are there enough raisins in my bag, does dd1 understand what is going on, is she hot/cold/indifferent, is she interested, doe sshe want an explanation or not, does she want reassurance or not, has she noticed that dog on the other side of the road, has she noticed the small child on a scooter who will run her down if she doesn't move, etc etc

the list is endless, and as the main person who cares about the effects of all of the above, it falls to me to try to contorl at least some of it, some of the time.

other than that, then yes, professionals not beliving me when I state what I know to be in dd1's best interests; professionals not believing e when I say dd1 can do somehting; professionals not believing me when I say dd1 can NOT do something;

people thinking that I am pandering to dd1 when I relax an iportant rule on occasion - do they really think, given her general level of compliance and behviour, that I don't now what I am doing? that I just might be taking the least stressful option?

Ignorant professionals who think they know better than you based on reading one pamphlet and watching DC for ten minutes

oh and the fact that simple tasks such as puting on socks can take 10 imes longer (as it did this morning)

and i agree with fanjo, not understanding what they want, not knowing what hurts when they are poorly.

I hate picking the dd's up from MS school as people tend to avoid me (appart from a select few that are lovely).

My son can stress me out but the so called professionals that we have dealings with (and I am mainly talking educationally) cause me much more stress!!

Sorry thats probably not too helpful.

Oh, and being told it's the parenting - I thought the refrigerator mother theory was disproved in the sixties?

school mostly, the lack of understanding and support for my son and the lack of communication with me - the fact that everything is a battle, just to get what they have to provide by law anyway

having to be a buffer between my son and everyone else, I seem to be the only one that can explain things to him in a way that he gets and explain him to everyone else (including his dad) I'd quite like to not be the one wading in to sort stuff out, just sometimes, lol

mealtimes - what and how he eats is a massive battle

and people who lump ASDs in with behavioural problems and declare them all an excuse for bad parenting (I don't think behavioural problems are that either, but I think if you're going to spout off you should at least know what the difference between ASD and ADHD is) yeah ok that's a minor one, but it really gets my goat, lol

um... I don't know what else really, there's little stuff like, teethmarks on remote controls and living with a pedant, lol, but actually the big one is school

being at home with him is fine, going out well it's a bit tricky but I can manage it, it's having to deal with school and teh education system that causes him and me the most problems

Oh ladies thank you!!
I am slowly but surely beginning to understand, there doesn't seem to be very much written on this book-wise, lots of journal articles showing that parents of ASD children are more stressed than parents of both typically developing and Down Syndrome children.
How do you cope?
It just seems to be a minefield for parents. YOu are all so good to repond, I hope you don't think I was prying as I said I am really interested in this topic.
Do you ever think there should be more written on the positives of parenting a child with ASD?

yes, relatives, my family constantly talk about how to "make DD better" and "train" her, like it's just my parenting, and as if she is not perfect the way she is!

oh and rilly rilly stoooopid stuff 'well meaning' people say. Don't mean to be idiots.

But they usually are.

General ignorance from school, strangers, other parents...friends. Not always their fault but you do get to the point you need to physically label your child as a child with asd and then give out leaflets!...Im nearing this point now. :) Ive accepted she is not NT why cant they!

Also the feeling of 'groundhog day' every day, sometimes I just need to escape for a bit or do something different with DD/DS but as previously said that is not always easy.

Accessing support is the biggest minefeild, NHS/SALT/Autism outreach, support in school...varies hugely, finiancial support and even other SN parents for tea and mutual sympathy....on bad days. (Thank god for MN)

Worrying about the future, finding communication tough...all the usual worries too.

Positives -

Progress is big news and emotional...every hill is a mountain for our DCs! So proud of my DDs achievements.

My DD never lies....very refreshing and an honest opinion, litteral stuff can be tricky yet amusing.

She opened my eyes to the SN world and helped me appreciate how lucky I am.

Everything Marne said and more. Most stressful is certainly having to fight for services and the loneliness some days. I dont know how we could but you really don't have a choice, if you don't it no one else will.

I find the selfishness of my gis hard because I know they are lovely and want to be nice but don't get it.

And finally how every little thing you do has to be changed or planned we or just not done. Simple things like a trip out are hard planning and hard going.

My top stress is not knowing how my son's recent diagnosis of ASD is going to affect his and our future - its the 'we have no answers ,you'll have to wait and see' aspect - will he ever talk, will he enter mainstream, will he live an independent life, will he fall in love and be loved back by someone ?

No-one knows what the future holds for any of our children or indeed ourselves and you don't really worry about it. Yet once you are given a diagnosis by experts all you can do is think about the future.

I can handle day to day life with DS at the moment but if I think about the future I feel a bit sick

If they 'the professionals' just left us alone that would reduce about 80% of my stress.

They cause more harm than good with their well-intentioned but understaffed, under-resourced standard 'one-size-fits-all' advice and intervention.

Having to battle against it when your child does not fit the only intervention they know about has taken over my life.

Knowing that the future means leaving ds in the care of said professionals is also the most stressful and scary thing I have to live with on a day-to-day basis.

I second everything on here!

For me particularly it's the crying. I guess, as parents, we are hard wired to find our child's cry stressful - it's what motivates us to tend to a newborn's needs. My DS is 3 and cries just as much as when he was 3 months (which was more than average anyway). This causes me the most day to day stress.

I'd say the reaction and judgement from other parents doesn't really cause me stress as such but it makes me feel very depressed and causes me to be very withdrawn.

I think (I've only known one parent with a child with down's so I could be wrong)

one of the big differences is that parents are given quite a lot of support, from early on if they have a child with down's - where with ASDs it's not spotted that early and it's quite often a long time before diagnosis

so there's a long period of time where there's something wrong, but no-one's sure what, it's quite often blamed on parents (as in there's nothing wrong that...wouldn't fix) it's not visible and you can't do a definitive test for it - all of those cause quite a lot of stress

I don't think there's ever anything written about the positives, is there?

I consider us pretty lucky in that he's high functioning, very verbal, lol

he's harder work than his NT sister in some ways, but actually some things are much easier, he doesn't lie, he can't, lol, he's overly sensible - I never have to argue with him about why he should wear a jacket for instance

he can't understand why other teenagers muck about in class or smoke or drink, so I don't have to worry about that

as long as I have a valid reason for telling him to do/not do something he will, he doesn't strop about complaining that it's not fair as long as I give him the logic, lol

he knows loads about obscure stuff - ok you have to put up with the talking at you about it, but some of it's massively useful, lol

he can be very unintentionally amusing and doesn't mind in the slightest that I giggle away while I tell him why

he's got a really admirable strength of character, yep he's stubborn and that's usually a negative, lol, but when he wants to do something he'll do it - even with all the barriers he has, he'll not give in to things (he has co-ordination problems and a speech disorder as well)

tabulahrasa - That was really lovely to hear some positive aspects, especially during the teenage years which I have been dreading because I've worried my DS will be bullied. (he's only three so it's a very long way off yet!) It's nice to hear, thank you