Suspect HF ASD in dd (8) what can I do to help until diagnosis?

[scattercushion]

Is there anyone out there who is further along in the process that can help? My dd has lots of the signs of high-functioning ASD (hypersensitivity, extreme emotions, rocking to self-soothe, dislike of certain flavours/textures, difficulty in social situations etc) and we are at the beginning of a diagnosis - seen a family support worker from school who is consulting with someone from CAMHS. But in the meantime, she is still having major meltdowns, sobbing and sobbing over what seems to me to be minor things, then a huge crying fit when I pointed out that she seemed to be crying a lot and there were other ways to deal with her emotions. She has also talked about killing herself. What can I do to help her? What help and support do people with HF ASD receive after diagnosis? Any advice very welcome, I'm feeling very worried. My husband is resistant to any outside advice because he believes her behaviour is 'normal' and he doesn't want her to be labelled but I'm afraid I am failing her. Or worse still, that I have failed her.

[Goldmandra]

You haven't failed her. You have recognised her difficulties and are seeking support and ways to understand her.

There are lots of things you could try and maybe some of them will help her. The key is to keep doing what works and ditch what doesn't because every child finds different things useful.

Letting her know plans in advance could make a big difference to her anxiety. We literally talk through the next day at bedtime, then go through it again at breakfast time using her timetable on a school day and again on the way home from school so she knows what's happening in the evening. A big whiteboard with a visual plan of the day might be good too.

Using weighted objects, deep pressure massage, hard work activities like carrying things, pushing a trolley etc can help. Google weighted blankets/lap pads.

Having a regular routine with plenty of warning of changes could help and don't forget that changing back can be as stressful as changing so try not to back out of something just because she is struggling.

Secret signals she can use to be excused from social situations might help her cope with them.

Labelling her emotions for her might help her understand and manage them better, e.g. I understand that you are disappointed we aren't going to the park and you're getting frustrated because I won't change my mind. Lets go for a walk around the block to help you calm down.

There's an excellent book about anger called The Red Beast. You can get it on amazon. Reading it to DD2 who has AS was life changing for us because it helped her understand what was happening to her body when she got angry.

Accept that her sensory processing difficulties could vary. A piece of clothing could be tolerated one day and drive her to distraction the next. A good rule of thumb is that the more anxious or overwhelmed a child is already, the less well they will cope with unwelcome sensory input.

Get her to think of all the things that make her feel stressed as filling up a bucket. The more things are in there, the closer it gets to overflowing. Once it's almost full, the tiniest thing can take it over the edge. My DD2 eventually learned to tell me when her bucket was going to overflow, i.e. a meltdown was imminent.

Once the bucket has overflowed, don't try to communicate or get her to do anything for at least 40 minutes. It takes that long for children to calm down enough to process language and thought properly again. Attempting to do things too early can set it all off again.

There are dozens more strategies that might help you but those are the ones that came to mind first. I hope you get lots more from other people.

[scattercushion]

Thank you so much, this is really helpful. Have you had a diagnosis for your daughter? So true about giving her time to calm down, I often want to talk about it too soon and she just gets upset again.

I'll buy The Red Beast, thanks for the suggestion. We read 'What to do when you worry too much' and that was really helpful. She cries/has tantrums a lot at the moment and I don't know how to cope. What do you do whilst this happens? My dd seems very scared and out of control when it happens but reasoning with her doesn't help.

Also - can I confess that I am very nervous about getting a diagnosis - I am worried about beginning something that can't be reversed. I know that she needs help but I also want her to be able to function in class. When I mentioned I was talking to someone about how to help her cope with her emotions, she definitely got worse. I'm worried this will happen after a diagnosis.

[Goldmandra]

I have DD1 (18) who was diagnosed aged 12 and DD2 (12) who was diagnosed aged 8, both with AS.

I have to say that, once meltdown has commenced I do nothing but stand back and wait. Anything else is likely to escalate things. They are rare now in our house now school is causing a lot less stress.

I do expect help to clear up and fix anything that's been broken because all children need to be prepared to face the consequences of their actions but that isn't until several hours later.

When you know that you can't manage your emotions and they take over and put you in scary situations, I would imagine the last thing you want to do is talk to a stranger about them. Both of my DDs have had to build up firm, trusting relationships with CAMHS practitioners before they could talk about their emotions openly.

I think what you need from diagnosis is recognition of what your child finds challenging or stressful, validation from professionals so that you can't be accused of being PFB or over-protective and strategies that you and the other adults who care for them can use to support your child and make life a little easier for everyone.

You don't have to share her diagnosis with anyone and you don't have to allow anyone to put in support or provision at school that you think would be unhelpful. In fact, it's important that you feel able to tell people when what they plan to do might make things worse.

Remember. You are the expert in your child.

[scattercushion]

Thank you, your message has made me feel quite emotional. Because my dh is so anti getting outside help and thinks that we can cope on our own and that 'it's just a phase' etc etc I have built up in my head what the impact would be of being labelled. I am so much more comfortable with the label 'highly sensitive' than HF ASD, it even sounds nicer! Do you mind me asking if your partner (if you have one) agreed with you about getting outside help or was there really no choice about it? Now your older daughter is 18 how does she feel about the label? I sound so reactionary and really I'm not but when you're faced with resistance (from my DH) I can't help but doubt myself about whether intervention is needed.

For example, today, when a meltdown was approaching (bucket was nearly full) I just completely backed off, made soothing noises etc and she calmed down. This makes me think maybe I can cope on my own? Or is this crazy? A friend of mine who is a psychiatric nurse said that if it goes undiagnosed it can lead to depression in later life... Argh I'm going round in circles, I just don't know what to do.

[scattercushion]

By the way, I haven't even broached with my DH that I think she could be AS, I am too scared! It will mean a row. But I think the family support worker is heading this way because she asked my dd to look at photos of different emotions and identify them...

[Goldmandra]

It must be hard having to manage your child's difficulties, your emotions about possible diagnosis and your DH's responses as well!

My DH is the type to just leave it to me and assume that I know what I'm doing which has its good and bad points so, no, he didn't resist the diagnoses. It has given him reason to question his own traits and behaviours and there have been times he's found that quite threatening I think but it's also given him some insight into the fact that his behaviour isn't always that reasonable. Also DD1 was in crisis after falling to pieces on her second day of high school and missing the rest of that year so there was no choice really.

DD1 felt comfortable with her dx from day one. In fact, she recognised her autism when she spent some time in the school's autism unit months before anyone suggested it to me. She says that the dx explained for her why she had always felt on the edge of groups, as if they had another level of communication she was missing out on. She loved the fact that there were other people like her out there and she wasn't alone in feeling a bit odd and left out.

She has just finished sixth form and has a lovely group of friends. Some of them are aware that she has AS, the others just know that she has had a TA to go to for help now and then. None of them seems the slightest bit interested in it, never mind bothered. She chose to include her dx on her UCAS application form so she could apply for some support at uni and she still got five offers, two of which were unconditional.

You know your DD really well and, if she only relied on you, she probably wouldn't need a diagnosis. There's a saying that nobody has Autism when they are on their own in their bedroom. At home, with you, safe and understood, a diagnosis won't make a difference because you will put in everything you can to support her anyway. The assessment reports might give you strategies you hadn't thought of but that's about it.

However, your DD isn't going to spend her life just with you. She needs the people at school, at Brownies, in hospital, etc to understand her and be willing to make adjustments for her too. The dx makes those things easier.

If she has Autism, she also needs to understand herself and her own difficulties. She needs to know the reasons that she finds some things harder than her peers otherwise she might just decide that she's inadequate in some way. My DD2 is beginning to understand that, although facing new situations is hard, that is only because they are new and it's worth persevering because that feeling goes away. Without knowing that AS makes change harder to cope with, she wouldn't understand this and might not be willing to try to overcome it.

If Autism does fit your DD and the professionals agree, you can ask them to discuss it with your DH. There are support groups for parents of children with Autism. Maybe you could find one in your local area to get some support for yourself? Those groups usually have lots of parents whose children don't have a dx in them so don't worry about that.

[scattercushion]

Thank you so much I really appreciate you taking the time to reply to me and answer my questions. It's so reassuring. You are absolutely right about the need for my dd to have strategies in place to cope outside the home. Bang on and I need to remember that.

Also fantastic to hear that for your daughters, the dx has been a help not a hindrance and that they haven't suffered any negativity due to it.

I am going to cut and paste your message so I can refer back to it. You're brilliant!

Sorry I don't have long to reply but wanted to say a big thank you.

[Goldmandra]

You're very welcome. Feel free to PM me if it's helpful at any time.