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?

SCHOOL.......

ASD is a complex, hidden disability, it is also inconsistent in it's presentation, which means that a behaviour in one context can be completely different in another. It is also grossly misunderstood.

Parents HAVE to be trusted as they are the ones that spend the longest with their children and have a vested interest in getting things right, and see them across the most varied contexts. They are also the ones that have the most to lose by not finding solutions to the problems their dc's face.

They are the EXPERTS.

Not being treated as such is imo the most stressful thing about this disability.

Everything is stressful! I am constantly stressed.

Because everything stresses DS, I am always stressed in reaction to his stress.

The diff (I think) between ASD and some other disabilities - like Downs - is the high level of stress our kids have. Almost all of our kids have high levels of anxiety, or OCD like traits. And it is this which really makes my life stressful.

That and waiting for school to ring to complain about him.... If school ring you you can never ever relax (or go to far from home) when they are at school because you never know when they will ring next.

Also the fact that I can't plan anything nice like a holiday because he will be even worse on holiday then he is at home, so no holiday will be enjoyable....

Haven't posted here for yonks but just popped out of the woodwork to say:

Delightful things
When he suddenly shows he can care for others
When he was invited to his first birthday party
When we have a day or even half a day or even an hour without a tantrum or violence
When he suddenly eats something new
When he learned to bowl a cricket ball

These are ordinary things, I know, but they mean so much more in the context of ASD because for my child with ASD they are massive achievements.

On the other hand I get an evil pleasure out of seeing NT children behaving badly and their parents losing it, or giving in.

Stressful things
Unlike many on this board (one reason I don't post much) I don't at the moment spend my life battling the system.
But I am worn down by the constant defiance, demand avoidance, rudeness, aggression and violence.
I am worn down by having to be always calm when he is not.
I am worn out by keeping my emotions under control because other people's feelings frighten him.
I am bored with his routines and need for predictability.
I would rather not have to listen to his stories that go on for half an hour without interruption.
I am fed up with the mess he creates while eating, and utterly frustrated at how long it will take him to learn about social expectations of eating.
I would rather not ever again have to clean up poo from his pants, or have to talk to teachers about toileting.
I am terrified about his teenage years and adulthood beyond them.

Apart from that (and whatever I've forgotten), it's all great. It's not that I don't love him but that I'm fed up with what it takes out of me being his mum.

vixen - bullying has been an issue on and off :(

there have been periods of I don't know how long that seem to have been filled with nothing but crying, from him and me, lol

I wish things were easier for him and there are so many many, lol, things I wish I could stop him doing - but I don't miss the child I thought I was going to have, if you know what I mean, I quite like this one

he'll be 15 soon and it looks like he's going to get some pretty good exam passes along with the awful ones, he's found a wee group of friends that get him and are willing to put up with the annoying stuff because they see he's worth the effort

even a year ago it was massively different, but I can't believe how much he's changed recently - not because he's not doing the things he was before or that he's suddenly able to do more, but just, he's kind of grown into himself a bit as he's literally grown

I have no idea if any of that made any sense, rofl, but basically - how he is now is so much better than I thought he was going to be as a small child, so how does it go, is it prepare for the worst, but hope for the best? is I think what I was trying to say

I agree with most things on here, pooey pants included! I find the most stressful thing is always having limits to normal family life. It would be so fantastic just to have a nice sunday walk along the seafront without having to constantly cajole ds along (he walks at the speed of a snail and often veers off in the wrong direction, when for some reason he somehow manages to be much faster), watch he doesn't walk into people etc. We can't go to the pics or all play together on a beach or go cycling, or have a holiday that is actually relaxing! We go camping and I see all the other mothers of 10 yo boys waving them off to play with their new-found friends while we have to constantly be on the alert to make sure ds isn't lost or run over. I do find myself getting resentful that our lives haven't moved on much in that respect from when he was a toddler. At the same time I'm afraid of him growing up and how I will cope with him/what will happen to him.

hi i would say dealing with people telling me my son isnt autistic because he can speak and the constant battle to get him to school ,also the fact that at almost six he is still in many ways like a toddler

tabulah I could kiss you for that post!

The worst was seeing my sons' distress caused by the interactions to do with school.

My husband saying that I was putting ideas in ds2's head, when he was beside himself with anguish and I was asking whether it was x, y or z that was bothering him.

My parents demanding to see the ed psych report on my sons.

My mother in law mentioning special schools again and again even though we were home educating happily.

The Badman Review on Home Education.

Incidents with knives.

Erratic, agitated behaviours.

The good things: honesty, clarity, friendliness from my boys. They like a predictable range of food, no need to think of exciting new dishes every week! They show that kindness and respect leads to happiness all round.

The unpredictability that rules everything we do. Most times DS is an angel, but we have to be on tenterhooks all the time for the meltdowns that could always be just round the corner. And for no fathomable reason. It's a particularly cruel form of mental torture, and I often want to scream at the unfairness of it all.

God there is so much more here than in the journals I've been reading for the last week.
A common thread seems to be the lack of expertise in this area and parents not feeling like they are being listened to. Can I be really inquisitive and ask about the process of diagnosis?
How long did it take for a formal diagnosis and what hurdles did you feel you were made to jump?
Is 'watchful wait' the typical response from the doctor?

We didn't have to wait long once the ball was rolling.

However, from what I've experienced, you don't tend to hear stories from people who had a quick diagnosis and no hurdles to jump through though. If things happen in a reasonable way you don't tend to talk about them if you know what I mean. Or maybe we are just really lucky.

Sorry, that isn't meant to be down on anyone who does have a hard time getting information and a diagnosis. Not sure it came across very well.

Being told "Lots of children do that".

Being passed from one professional to another,

Trying to get older siblings to understand youngest.

Trying to get school/others to listen and take our concerns seriously and not to think they know more about my child than I do.

There seems to be a fear amongst professionals of labelling children which overrides any concerns about the damage done to them by inadequate educational provision while they are waiting for a diagnosis.

The diagnostic process can be quite secretive with reports and conversations between professionals leading to conclusions which could be avoided if parents were asked for their thoughts. My daughter's working diagnosis is to be reviewed by a diagnostic panel next month and although I will apparently have an opportunity to express my opinion I have no idea what most of the professionals involved will say.

The SALT has written a report stating that she doesn't have a social communication disorder because she was able to sit in a quiet room one to one and hold a conversation and she also talked about meeting a friend outside school. I now need to explain that she is highly intelligent and can hold a conversation in a calm, predictable environment with a sympathetic adult but she is way out of her depth with two or three other 13 year olds. The friend she 'meets outside school' is a 30 year old with her own social communication issues who works at the stables where DD1 likes to spend time and shares DD1's view that horses are much more worthwhile and easier to understand than people.

As I don't know what the other professionals will be saying I will not have an opportunity to clear up any of their possible misjudgements and her diagnosis may not be confirmed. It should be a much more open process which involves parents every step of the way as we are the ones who consistently see the real child rather than the front they learn to use in self-defence.

Sorry for the rant. Hope that makes sense.

ooh a kiss (isn't sure what it's for but figures kisses or almost kisses are always a good thing, lol)

diagnosis... (the short version, lol)

noticeable speech problem from very early on, lots of speech but bad pronunciation and no effort to correct ... so weekly SALT from 3 yrs old, changing over to the school one when he started nursery

Nursery mentioned bad pencil grip and scissor grip

school (end of P1 age 5 1/2ish) referred him to OT for the pencil grip issue, OT commented on sensory integration problem - and co-ordination problems, especially fine motor control

beginning of P2 age 6, school asked to refer to CDC for autistic assessment

I at this point was well aware that something wasn't 'right' and it was me that had pushed for SALT but didn't think it was autism as I thought I knew what autism was as I'd had experience with it, I was thinking dyspraxia tbh, but I agreed to it anyway - figured it wouldn't do any harm

I did a bit of research anyway, came across Asperger's and went - oh shit

he was assessed at age 6.5 by CDC doctor and their SALT, they said... Asperger's definitely a possibility, of course he was dyspraxic, but it's hard to tell the difference between speech disorders and autism at that age as some speech disorders mimic autism...

6 monthly assessments followed for the next couple of years then yearly, with one with CDC doctor and a clinical psychologist thrown in for good measure with lots of - not willing to label him at this times and we're waiting to see if he grows out of its

his primary school were great with him, but it did get a bit tricky as he got older as he was aware enough to notice his difficulties, but I had never told him anything really as he didn't have a diagnosis, I wasn't really sure if he was ever going to get one and if he did what it was going to be of - and he doesn't do well with vague, lol,

so we ended up having to tell him he might have Asperger's and then telling his class - but by this point he's a very isolated boy with poor self-esteem it was all pretty rough

and when it came time for secondary school... he still didn't have a diagnosis and the ed psych decided he wasn't autistic anyway, so we had no choice but mainstream (can you tell that wasn't my choice, not that I'm still bitter about it, lol)

age 13, after his annual assessment CDC doctor phoned to say...not willing to label at this time etc. etc. but got my DP and not me, I still don't know exactly what he said, but he did lose his temper a bit and was asking why DS couldn't just have a diagnosis of anything as at least then he'd be happier about it and we wouldn't have to worry about what was going to happen when he left school with still no diagnosis of anything, he arranged a time for me to phone her anyway because I was always the one who dealt with all that.

I did that, she said that she was planning to just carry on as was, but after speaking to my DP she had decided to diagnose him with Asperger's, she still thought there was more going on than that, but was willing to settle for that for his benefit.

I don't really know whether I should maybe have lost my temper with her earlier, or whether DP sounded autistic when he talked to her and that convinced her my DS is, rofl

DS is much happier now he has a certificate saying he has Asperger's, much more so than when it was just - we think you might have and more importantly he can now access autistic only provision, like a youth for children with ASDs in mainstream schools

I don't know if that massive post tells you about hurdles, the one thing I do remember was always feeling very judged - I'd be given questionnaires asking things like, what did your child typically play like as a 6 month old? which I couldn't answer as he was 6 or 7 and I just didn't remember, he had toys and he did things with them is apparently worthy of an eyebrow raise and a hmm bad mummy look

you're also either spoken to as a simpleton or you're expected to know everything already - there doesn't seem to be a middle ground

I was asking for a referral for something not being right FOR A YEAR from my HV.

Eventually she got tired of my nagging and referred me to a community paed for 'my piece of mind' and sent a note to my doctor saying that she thought I had PND.

So I see the paed for my piece of mind and she says he 'probably' has autism and they will refer him for assessment. He will also be referred to the autism advisory service and SLT and a SN class. DS is 2 yrs 3 months

I was shocked but thought it must be unlikely right? He didn't have autism when the HV referred me. I saw her referral notes which said she hadn't noticed an unusual behaviours.

So I research autism. Within a week I KNOW without a doubt. So I call the paed and ask how long until the assessment.

She tells me the waiting list is a year but not to worry because support and intervention is based on need, not dx.

Then the letters come. 1 from autism advisory, 1 from SN class and 1 from SLT, all saying the same thing:

'Your ds is on file PENDING dx'!

So effectively, I have just had a ds diagnosed with autism and have been abandoned. No information. No support. No prognosis. And I am expected to live like this for a year. Not only that, but arguably the most crucial year in my ds' development.

So I spend that year researching my arse off, attending training that I self-fund, getting in assistants to work with ds, getting assessments of weaknesses to work on and working with him every single day and monitoring carefully his behaviour, progress and outcomes.

Eventually I get the dx, which by then is just an admin exercise and the help floods in except.....................

What I wasn't expecting is that 'help' was going to be 1 hour visit per week from a nursery nurse specialising in autism, who patronised me and had total disregard for what I already knew about ds, and what I already knew about autism.

He started preschool, where they allocated him a 1:1 (eventually after a big fuss from me) who joined in with his stimming rather than redirect it and had not a clue. He was visited by above nursery nurse at preschool, once per term to give them advice.

The SLT was barely there and offered some solutions that tbh I was doing before I ever suspected there was anything wrong, like sing nursery rhymes and don't do everything for him.

The SN class was a general disability group and although nice enough, didn't appear to know anything about autism and focussed too much (for ds) on physical disabilities.

So I gave back the 'help' and continued to do things as I was which resulted in ds progressing at 2-4 times the rate of his peers (Depending on the skill area).

He is now in Nursery 15 hours a week but are they interested in the work I am doing with him, what he knows, how to motivate him, how fast he can progress if you get it right? - NO. They deny the progress (Despite independent assessments) and refuse to communicate with me about what they are doing.

They tell me he is making good progress, but in a whole term have not told me anything he can do that he couldn't do before he started there. Their idea of progress imo is based on false assumptions and general ignorance about ASD.

'peace' of mind, although I have certainly given a piece of my mind!

Star - I now totally get why you are so bloody excellent at advising in the field of ASD.
This thread has been fantastically honest which in itself is very supportive. It has made me feel a bit stronger too.

I am proud (although still somewhat reluctantly) to be part of a group of mothers who will climb over mountains for their children.

"So effectively, I have just had a ds diagnosed with autism and have been abandoned. No information. No support. No prognosis."

that's a point, I was given a reading list at his first assessment and pretty much the same one you'd get if you put autism and asperger's into amazon at that, lol

that's it, that's all I've ever had...

I did have exercises from SALT to do with him pre-nursery, but that's because it was done separately from everything else by referral from the health visitor - once he started nursery it was a different (completely unreachable) SALT

post-diagnosis he has access to community education that he didn't,(the youth group) and he could join other groups, but he isn't interested in drama or music - but that's really all he now gets that he didn't

we lucked out with his primary school - and we did luck out because it wasn't the school I wanted him to go to, but it was our catchment area school at the time, secondary was a whole different ball game, but by that time I knew what they should be doing and more importantly what they shouldn't, but you really shouldn't have to tell them how LEA policy works or about the DDA

Thank you so much for being so honest and open with your posts. From people I know who have a child with ASD and from your goodselves I am getting the picture together in my mind. Everything points to early intervention but it's seems the reality is that the provision is just not there or there is just too much in the way of red tape to access it.
I know this is not the same for all parents by the way.
Was the diagnostic period the most stressful period for you?
This is not related to my coursework piece but was just wondering if the journey you and your child have been on has made you more assertive, more ready to fight for your rights so to speak or do you think there are less assertive more timid parents out there being fobbed off by the 'experts'?

Absolutely! It soon became clear that in order to access adequate provision for my daughter I had to be willing to argue (constructively) with professionals. That is not something which comes easily to me and I've found it hard to get over meetings where I had to disagree with people and stick to my guns because I knew I was right and they had an underlying agenda which was not necessarily in my child's best interests.

I have recently found myself coaching other parents through the early days and encouraging them to be more assertive about getting what their child needs.

The diagnostic period is very stressful if you know that adequate provision is contingent on a diagnosis. The possibility that the professionals will deny your child a diagnosis and cut them adrift to cope without support is truly terrifying.

After diagnosis is stressful in a different way. You suddenly have the label you have been fighting for and you then go through the process of grieving the child you should have had and coming to terms with the future.

Oh yes, they are definitely willing to fob parents off with less support if they can. I'm pretty assertive, as far as my DS goes, so perhaps why I got what we wanted pretty easily. Thinking back it wouldn't have happened if I was afraid to question what they offered.