What is the hardest to cope with with your ASD child's behaviour?

[Cookingwine]

Just curious really, having an ASD child, (undiagnosed until she was 10) I find it extremely hard but cannot really pinpoint what is so hard. It is frustrating trying to explain to family and friends that every little thing is difficult, like getting dressed, washed, going anywhere, everything is a battle, that can result in her losing the plot and me shouting to get her to JUST DO IT. And that she can be so anxious and stressed with NORMAL things, that she cannot keep friends as she is demanding exclusivity and gets too intense.

[bigmouthstrikesagain]

I have two ASD children a 10 yo and an 11yo - the 11yo is currently waiting for assessment - and will be waiting a long time due to local issues (which I have posted about at length elsewhere) - but if his sister has ASD is so has ds.

It is a rollercoaster and I am trying not to sweat the small stuff otherwise I will drown in sweat! Really the difficulties I have in dealing with the kids are in direct proportion with how stressed I am feeling generally - if i was working fulltime I would fall apart - thankfully at the moment dh can be main breadwinner and i keep the shit together. I find that I am still pretty much dressing dd1 in the morning (although she is 10) she still struggles to stand on one leg for more than a second and she will sit staring into space going into "dd1land" if left to her own devices - on a good day she will be all "hello sky, hello flowers" on a bad day we will be distracting/ cheerleading and encouraging her all the way to school. But she is a naturally sweet natured and positive person so she is a delight in the right frame of mind and it is awful when she is sad/ unsure of herself and distressed. So I find her sadness unbearable as I want to take it all away - and I can't.

ds is more complex - his extreme anxieties are tied with his hyper awareness and self knowledge and he is so articulate that in the morning (before coffee) I sometimes struggle to argue with his negativity and depressing logic - he also will refuse to accept responsibility for things he has forgotten to do so I am stuck arguing over the fact he has forgotten where his clothes are (despite being told minutes even seconds before), I stupidly will rise to his arguments if in the wrong frame of mind. This morning PMT and DS was a toxic combination and he went to school in a foul mood. I am left drained and guilty. I cheer myself up by thinking of ds as Marvin the depressed robot in the "Hitchhiker's guide to the Galaxy", my favourite character , he to had attitude that ds often ahs of having a 'brain the size of a planet' but having to deal with stupid human tasks like opening doors (or in ds case brushing teeth) - I find taking things too seriously makes me more stressed so although my naturally sarcastic tone in response to surreal intense arguments over the location of school trousers goes down really badly with ds - in my head I am hilarious (hey- whatever gets you through!).

It is managing ds's anxieties that are so time consuming and as he gets older finding suitable strategies that don't involve me shouting 'just bloody do it!" is actually really tricky. I do think ASD and puberty is a particularly painful combination and I am bracing myself for storms ahead!

I have to find a way to get ds to allow drops to be put in his eye and possibly give a blood sample at an eye appointment in hospital. He has extreme phobias about blood/ veins/ touch and drops of water anywhere near his face so the thought of trying to persuade him to allow eye drops - that will sting and make his vision blurry - is really daunting! He is never going to let it happen and outside of knocking him out or tying him down - I am at a loss.

So yeah ASD is a bugger sometimes but I have accepted the reality and really I like to remember all the amazing things my kids are - despite the previous paragraphs detailing his less positive traits - my ds is also an incredibly polite, intelligent, caring and sensitive child - he loves his family and is a great asset to his school, he just finds some things really hard and his biggest challenge is his fear - I want to help him just like we all want to support our children.

[FeistyColl]

Being the parent of a child with ASD is incredibly hard!
My DD (11) has extreme anxiety and demand avoidance. I use a PDA approach. I know that from the outside some people might view my approach as 'giving up'. I don't battle over hair washing and teeth brushing, clothes etc. Not because I don't think they are important but I realised it was counter productive.

The more I insisted, the greater her anxiety and the bigger an issue it became. Like pulling on a seat belt - if it jams, it doesn't matter how hard you pull - it won't shift. The only way forward is to go backwards first!

I also realised that what I was aiming for in the long term was for my daughter to be able to make her own decisions, for the right reasons. I am never going to get a 'compliant' child so my focus had to be on building skills for the future. And this approach is pretty successful. By which, I mean that DD chooses herself to brush her teeth (not twice a day every day like 'most' children) but she knows why she should and wants to! I'd say that she brushes most days and we have no battles. She also now recognises that washing her hair feels good and helps get the tangles out, so again makes her own decision to shower. (Not every day but more often than when I was trying to insist). I do remind her but accept her decision if she says she can't. I have also noticed that sometimes allowing her to say 'no' enables her to then go and do it! Being given control, reduces her anxiety.

I often go back and read bits of Ross Greene's The Explosive Child because I love his philosophy that every child will be good if they can. I really relate to the view that children who struggle, do so because they are missing vital skills.

After 2 years of trying and failing to find the right education environment, she is now educated at home (she has Education Other Than At School) on her EHCP.
Our lives are still incredibly stressful and massively restricted, but her mental health and well-being are very much improved. The lowest point for me was hearing my then 9 year old sobbing her heart out, begging "If you loved me you would kill me and put me out of my misery!"

[Lollipopstick]

I have not embraced my DS's autism - it doesn't mean I don't love him. I don't apologise for feeling that way. My whole life is about making his life better.

There are ways that the autism makes him a more interesting person - he's very imaginative etc

But there are many ways in which it makes his life more difficult - lack of friends, a bad temper when to things don't go his way, switched off when disinterested, poor attention at school. If there was a magic pill that could cure him of the downsides I'd let him have it. It would make things easier for him.

I'm naturally a pessimistic shy person who is prone to depression - I don't embrace this part of my personality and just accept it. I work hard to be more optimistic by doing cognitive behavioural therapy. I have made an effort to be more sociable and to make friends. Doing all these things has made me happier in life. If I'd just embraced my natural personality I'd be friendless and depressed.

[soapboxqueen]

cooking I'm assuming that was aimed at me. That comparison was made by autistic people trying to explain how they felt about their autism to nt people. It's a comparison I've seen a few times and has been confirmed to me by other autistic people when I've asked them their thoughts about it. I'm sorry the views of actually autistic people upset you.

[Cookingwine]

It felt good though, but I agree with you, out of order. Your post was relevant though and I agreed with it, and the OP managed to sort out her difficult situation tactfully thanks to the sensitive and experienced advice of sensible Mnetters. I decided to not reply twattishly to the comment comparing homosexuality and disability, but it was tempting. I am learning maybe.

[ouryve]

Can I point out, cooking, that it's not really good form to take your earlier altercation from this thread and shit dump it into a thread elsewhere on mumsnet. It wasn't even relevant to that particular discussion.

[Cookingwine]

Interesting link Waiting, thanks. You wonder what CAMHS do all day, so many disgruntled parents! A friend in RL with 2 ASD DCs had a positive experience with them though. My hope now is that there will be some counselling/resources at her secondary school next year, or going back to GP for another referral if things get scary again. And then wait a year to be seen

[Waitingforsherlock]

www.mumsnet.com/Talk/am_i_being_unreasonable/a2610139-To-think-CHAMS-is-shit?msgid=60418097#60418097

[Waitingforsherlock]

I find lots of things difficult. My dd wasn't diagnosed until last year at the age of 12. She had been 'quirky, spirited and headstrong' all her life but never so anxious that she would vomit down her front on the way to school or threaten to run away and never return. We have really been left high and dry after diagnosis; it's been very difficult to access help via the NHS and she now sees someone privately. She is so angry about the diagnosis and refuses to even have the word said in her presence so this is a major stumbling block.

She asked me the other day why I cried so much and the truth is that I feel that the girl she was has gone. She always seemed so confident and happy and now I fear for her future. The other reason for my tears is the constant conflict; between her and me, her siblings and dad. She is almost constantly aggressive and her mood can change in the blink of an eye. Everything is difficult, leaving the house is impossible some days and it seems that there is little chance of going away anywhere. Everything seems very unpredictable with aspergers. Her mood, behaviour can vary so much even minute by minute, I am constantly having to change approach. The demand avoidance is tricky too but I have come to expect that now.

You can probably see I am still far from acceptance. She's home educated now which means I worry greatly about socialisation and trying to get her out and about a bit. I also worry about her lack of routine, excessive screen time and education. Also what will happen post 16? But for the time being I take pleasure from the small things, a day trip or lunch out or even walking the dog, things that she couldn't really do this time last year.

In view of the hair washing this isn't a problem for us now she has hit her teens, one of her special interests is beauty, ( esp make-up and hair), last year she would happily fall asleep at night deliberately with dirty teeth but now she barely comes down without a full face of make up and shining hair. Don't know if it's hormones or what but it seems to please her and make her feel better about herself

Interesting thread on AIBU about CAMHS and ASD. Would link but will probably lose this post

[Bananasinpyjamas1]

Wow I just have to say some of you posters are amazing coping with seeing your ASD kids so unhappy - crafty and others whose kids have been suicidal - I can't think of anything harder.

Unknown future is pretty hard. Looking after the other kids too is hard, not wanting them to be forgotten. Embrace ASD? No. Love my own child and help them? Of course.

[Cookingwine]

Yes Crafty, the negativity is really difficult actually. I get completely panicky when her anxiety and/or depression overflow, I feel totally hopeless, I was thinking counselling but don't know where to start, I was thinking medication but can't decide if she really needs it, and bloody CAHMS have discharged her without even seeing her, their letter said that the GP referral was about getting a diagnostic and since we went private (because we waited more than a year to hear back from them) to a centre they recognise, job done, bye bye.

[craftyoldhen]

2 things I find hardest:

1. how much my DD has regressed. I remember my bubbly, bright, confident, funny, chatty 4 year old - I was so sure would do fine at our local school. I now have a nervy, depressed 8 year old who won't speak to people, wouldn't look at them, wears her ear defenders and fleccy onesie constantly and doesn't particularly like leaving the house. She has very few friends, hates school, hates life a lot of the time. Her sensory issues have gone through the roof. It's pretty heartbreaking to see, and I can't come to terms with it.
   
   
2. it's like living with a dementor. She is unrelenting negative. I know it's not her fault, but it's incredibly difficult to live with her sometimes.

[Stradbroke]

We also have battles about hairwashing and hair brushing. We tend to spring hair washed on her when she is in a receptive mood.

But imagine my delight when she found the Vicks vapour rub and smeared half a pot over her head!
That was not a fun morning of washing hair

[lamya190]

OP I really feel for you. What you are going through is completely normal. We are all not saints and brining up children is hard enough let alone kids with special needs who need that extra bit of help and push in life. I think most mums of children with ASD would wish their child didn't have ASD due to struggles the child will face in life and also to the struggles the child will face after their parents passing. My son has HFA I am constantly thinking, is he going to get married, get s job, go to uni etc. Basically parents worry about their NT kids and the worry for kids with autism or any other kinds of developmental issues is so much worse... I read a statement once where a blogger once wrote 'my child is a blessing, autism isn't' that rings so true

[ari11]

Lots of things I think are hard to cope with but everyday I am learning. For every day that's hard I try and think of the positives and what my ds has been able to achieve despite his difficulties. The only way we can wash my ds (5yrs) hair at the moment is with a water pistol, not completely effective but fun:)

[Melawati]

Yes, rude and horrible behavior towards younger siblings pushes my buttons every time!

[Cookingwine]

ASD support group seems the way forward MELAWATI. I hope she will find one that she likes. she is in the bath, about to wash her hair and I only had to mention it once :) I think she decided all along that she would do it the last day before school restarted. Hard to see where the stubbornness stops and where the ASD starts. And what about barking rudely at her youngest sister? That's another thing that makes me react impulsively. And do I have ASD myself? CONFUSED and EXHAUSTED, certainly. ASD? cannot decide.

[shazzarooney99]

Constantly feel like we are walking on eggshells. The violence, the threatening to kill himself.

[Melawati]

cooking I think I understand where you're at. My DD was dx at just turned 12, about 9 months after the possibility of ASD was first mentioned by anyone.
I found it very, very hard to get my head around, and to make that mental shift from viewing her behavior as something she was choosing to do that made all our lives difficult, to seeing it as something she's not really in control of. I still lose it and shout, especially when we're all trying to get out the door. It's particularly hard if you have other (younger) DC who also need care and attention at busy times.
There's so little support for the late diagnosed, no early bird or similar courses to help understand behavior. I do think this just adds to the difficulties, you're really on your own.
What has helped us is getting in touch with our local NAS, which has helped us meet more girls with ASD, and helped me with support. It's tempting to see fitting in to the mainstream as goal to aim for (or a place to get back to for girls who were masking and seemed 'fine' when younger), but allowing our girls to be themselves lowers stress and ultimately makes life easier (but different).
We have found the girl with the curly hair useful for explaining things to others, there are a couple of good comic books dealing with issues that come up at school.
I love my DD, but I do wish that our lives weren't dominated by ASD. So in that sense I don't/can't 'embrace' it, but know I have to learn to live with it.

[DN4GeekinDerby]

I have ASD as does my eldest [at least, diagnosis circles of hell here means I stopped and didn't bother with the others]. We home educated from the start so I can't help with that but to answer your first question - the worst is when we sensory clash - he is auditory seeking, stims with sounds and noise, and I am auditory avoidant most of the time so it's been a long road of compromise and trying out new stims and such. It took ages for him to understand that the noise he makes that makes him so happy and feel so safe for him can make other people feel unsafe and unhappy.

From your posts, I am going to recommend neurowonderful and aspergerexperts via youtube and their websites which have a lot of information from the ASD point of view which can take down the first step of understanding and working through a lot of the emotions and clashes you seem to be having. Even as an ASD adult, these two places really helped me to explain things to myself as well as to other people and as well to my eldest who doesn't like any diagnosis [unlike myself, my ASD diagnosis was a relief] but likes how they talk about how they cope with things and aspergerexpert's book recommendations really pleased him.

[Cookingwine]

I am sorry I reacted like that, and thank you to EVERYONE on this post, even those who made me boiling, as I realise that yes I am really angry with DD, with myself for being angry, and somehow I think I am progressing on the grieving path, now I am just plainly sad which is embarrassing as I am still at work. DD is amazing, she really is, I love her to bits, and I wish she could have an easier life.

[Stradbroke]

Cooking - I am sorry that you have left the thread and I hope you are still reading. It sounds like you are finding things hard and that you are struggling with the 'everyday' being difficult. That is understandable.

I think maybe some of your posts have come over as quite angry with your daughter and like you wish she were different (and maybe today you do).

It has taken me many years to get to the point of accepting my day to day life and not wishing things were different. There are still days where I cry and get frustrated and wish that things were easier. But for the most part I have accepted my daughter for who she is and our family life for what it is.

The way I feel has a huge impact on how I am with my daughter and therefore how she functions.

I have had counselling and worked very hard to get where I am.

Do I embrace it? No, not really.
Do I now accept it? Absolutely.

But back to your question. What aspects do I find hardest? My daughters need to control when she gets anxious and the negative impact that has on the rest of us. The unpredictability of what mood she will be in and the fact that this can then determine the mood of the rest of us.

[Lesley25]

Op it's early days for you. Please don't go. Let's all try and be a bit kinder. Those early days are tough, dont feel you have to say the right thing in the right way, It's ok to be consumed by it all. X