New diagnosis HELP>>>>>>

Hopefully it's not bullying, as she's off school now for 6 weeks I will monitor it to see if there is a change. The Paediatrician has not mentioned Synesthesia at all however every time we go back they are finding something new. She has appointments with the O/T and the Psychologist again soon and we are expecting more. Autism is such a broad  diagnosis isn't it?

Meltdown is definitely different from tantrum. The colour thing is great though. Another thing occurs given her various needs - does she have synesthesia? If so, maybe it will be possible to firmly ascribe colours to feelings and then she can tell you if she's had a red day or a blue day or a grey day...if that makes sense? Sort of a euphemism code between you to help her figure out her emotions, what makes her feel a certain way and how to tackle it if there is a problem.

She might not be being bullied, kids sometimes tease and that can be misunderstood when someone is struggling with understanding social interaction. I remember one incident when some of my friends played a silly prank on me. I got really angry and I threatened to leave the school and go somewhere else because of it! They were freaked out and told me it was a trick and then I felt silly - but I really didn't get that it was a joke.

There are a couple of little angels at her school that do use the words she says in a meltdown. Hope she is not being bullied, talking is good with her and I might try for her bedtime story getting her to join in with feelings etc

She can't write properly as her Hypermobility makes her writing quiet scruffy, but were getting there with a slope board and a rubber grip. She loves crafts and colours and I pick up a lot with the colour she chooses to use, ie black and grey for sad days yellow and red for happy days. I do think it's when she is overloaded her meltdowns are worse but even if I say NO to her with no overload a little meltdown will occur (Not a tantrum as some people seem to think)

Good answers here. Worth checking about bullying. I'm not a parent nor an expert, and don't take anything following too seriously.

Emma mentioned 'alexithymia'. It seems about half of autistic people find it very hard to know or say what they're feeling, so that may be why your daughter says 'I don't know' so much. Learning to understand yourself is hard and maybe needs lots of conversations.

The diary is a good idea. I'd suggest recording positives as well as negatives to help you see any pattern. Besides a sensory hypersensitivity, there can be hyposensitivity and a need for a particular stimulation (hence stimming). Not being able to feel or make sense of bodily sensations is common (poor 'interoception').

Rather than just asking the reason for any upset, you might want to encourage her to explain more what she's thinking, and if there's something at the back of the mind she's trying to keep out. How about prompting with names of emotions rather than 'upset'? Something like 'I think school was exhausting today. Am I right?' or 'Are you afraid you're not going to know what to do when X happens? We can talk about it.' Maybe increasing emotional literacy through stories and asking what you would do in a character's shoes...?

I am having lots of trouble with getting the pages on this site to load so I hope this will work :)

If she is using terms that sound that way she is probably picking them up from someone in her peer group. I don't know if she is being bullied or feels that she is. Does she like going to school or does she become anxious going? That might give you a clue. I had periods when I was being bullied that I would freak out about going to school - and come out at the end and take it out on my mother like she'd sent me there to upset me. Obviously neither of those are good things! I used to hit or kick, I never spat - but maybe if someone at school did that (not necessarily to her, but just in general) perhaps she's copying.

The reason I asked about the counting and the cuddling etc - if you don't know what is triggering the upset, then it's great those things work but it may be more difficult for her to associate the comfort or rescue options with the problem she's tackling. That means that if she doesn't connect deep breathing to being upset about something, she's likely to still get upset but not be able to deploy the calming mechanism without your prompting. I don't know if that makes sense, but I find that I still often see things other people view as 'the same' as different situations. So to try and give an example, maybe the sound of music in your house doesn't bother her, but maybe in the car it does. I am obviously inventing that but just that triggers are not always 'the same' in the non-autistic definition of same...sometimes they are a combination of things coming together. And sometimes it is difficult to explain why we are upset. It is obviously so frustrating for you because you obviously care a lot about her and want to help her. The OT is a great idea as well since they can probably give you more insight.

Does she like to communicate ideas in other ways? Does she like drawing? Making patterns? A TV show she really likes that you can maybe use to present examples to her and see if anything resonates? Autistic people's communication can sometimes be anything but verbal...so I suggest trying to be creative? I don't know if she reads or writes yet, but maybe there's something you can use that's detached a little from talking directly about her - sort of a hypothetical description? I find it hard to say if something upsets me, but I can theorise on a problem and describe it.

One other possibility is simply too much stimuli. Colour, sound, texture, people...smells...all of these things sometimes collide together to overload autistic brains. Since she also has ADHD it sounds like she might get overloaded a lot anyway. There may not be one reason she's upset. It might just be the fight or flight panic impulse.

I really hope some of this makes sense ;) I can tell you really love her and want to help her, so I want to help her too. My disclaimer is that I'm speaking as an autistic person, not as a qualified professional.

Thank you Emma, we try cuddling her however she does have 1 special fluffy blanket that I will try wrapping her in to see if that helps. I am also trying to "Diary" what I think are her trigger points as well as asking her, however she does always says "I don't Know"...Difficult X

Hi, Thanks for your reply. We have asked her why she gets so upset and she always says I don't know. Some of the words she uses sounded like "playground bully words". As school has broken up I will have to talk to her teacher after the holidays and see if maybe she is being bullied by some of the less understanding children. The counting to relax does sometimes work as does the cuddles to reassure her. We always knew she was different to her peers, however I would rather have 100 of her than some of the children around her. We have a very caring and helpful family, we are just having to relearn to parent as her older sibling does not have any learning difficulties. We are having a meeting in a couple of weeks with her Occupational Therapist at home and I think I have all bases covered, however if there is anything I should be asking her any suggestions would be great.

This may sound like a silly question (apologies if it is), but have you sat down with your daughter and talked to her about the things that make her upset? She may not be able to verbalise this or she may find it hard to explain, but it just occurs to me that communication with a child with autism is really key to understanding how to help them deal with the things that are bothering them. 

If you don't know what's triggering her, it is hard to know how to manage it.

I wasn't diagnosed as a kid, and I had a lot of misunderstandings and problems with people because of it. My mother thought I was defiant because she'd tell me not to do something but I wouldn't understand that two incidents were to her the same thing, to me they were different if they happened in different places/with different people/at different times/on different days. And I had a lot of bad experiences at school being repeatedly punished by teachers for 'defiance' when I didn't actually understand what was going on. You said your kid doesn't understand she is doing something wrong - but is she actually doing something wrong or is she doing something that you don't understand? There is a tendency to assume that autistic meltdown behaviours are 'wrong' but that's negative and doesn't resolve what causes it, thus can't possibly stop it. All it can do is make the kid feel worse for doing something to make you upset.

It sounds to me like your daughter is trying to tell you something is really freaking her out or scaring her but she hasn't found a way yet to make you understand what that is. It may be that school is part of that as well. It certainly was for me, but because everyone always told me off, I didn't know how to explain how I felt to anyone. I just felt like a bad kid. Your daughter has only just been diagnosed, so she may already have experienced 'bad kid' mentality issues as well. 

I don't know your daughter so I may be way off the mark and feel free to ignore all or any of what I said. Just, as a person who has been that little screaming, kicking girl with autism, I really want to try and help you and your daughter going forward. Autistic kids have a lot of potential locked up inside of them, but you as her chief supporters are so integral to that process that the sooner you begin, the better.

I would much rather parents spoke to their kids about the issue before talking to other parents about it. Other parents are not your kid with autism. Unless you hear the kid's own concerns (if she is able to voice them), you are still only working on assumptions. Once you know how your kid feels, then you can go talk to other parents and compare notes...but if you just rely on non-autistic adults to tell you what to do, you won't ever get into the head of your autistic child, and that really needs to happen as early as possible so she can go on to live the best life she can (and so can you!).

Also, your daughter is herself. So her triggers, needs, issues will be somewhat unique to her and her situation.

Hi,

The parent helpline sounds like a good plan! As an additional piece of advice I get the impression that where your daughter's meltdowns are concerned a different approach (in the way of prevention rather than cure) may help a lot. 

Apologies in advance for the wall of text. I've tried to break it into sections.

It's worth stating to start with, as you may or may not have come across, the AS meltdown situation is very different from the usual tantrum or angry outburst. Trying to calm it down when it has started is extremely difficult (I would say nigh-on impossible) due to its nature. It is often the sum of a day+'s worth of frustrations and sensory overstimulation that the person cannot process effectively. Some people use the analogy of a bottle of fizzy drink being shaken; any discomfort or obstacle (often ones non-autistic people don't even notice) is another shake of the bottle, until it simply can't take the pressure any more and explodes out.

The best strategy to avoid meltdowns is to;
1. work out what factors are contributing
2. nip the triggers in the bud before they "shake the bottle"

The obvious way to do 1 is to ask your daughter, but due to her age and the nature of autism (which is often coupled with alexithymia- the inability to identify and articulate emotions) the triggers might be difficult for her to identify or communicate to you, so here are some common ones:

A: Sensory
Autistic people are often very sensitive to a variety of everyday sensory experiences compared to non-autistic people. This can be certain textures, light quality/intensity, noises, etc.
Are there any obvious environmental triggers that upset your daughter? Are there any ways she can avoid or reduce them?
Ear defenders or tinted glasses, for example, are common tools autistic people use to navigate the world comfortably.

B: Routine
Autistic people on the whole, especially kids, have a real need for routine in order to feel comfortable and secure.
The easy thing to do in this regard is to have a pre-determined schedule for even everyday events (at X-O-Clock we get home from school, at Y-O-Clock we have computer time, at Z-O-Clock we have dinner...).
The difficult thing is dealing with an unexpected schedule change- this happens, the only thing you can do is give as much notice and explanation about the change as possible, then set out the new schedule. "X isn't going to happen tomorrow because Y. Instead, X will happen on Friday, and tomorrow we will do Z." 
The most difficult thing is when the autistic child comes up with their own schedule/script in their head and doesn't tell anyone else about it, then gets very distressed if anything external happens to change it. The only remotely reliable way to avoid this is to talk through and arrange the day's itinerary together before the event (as per the first point), so that the child doesn't need to invent their own mental schedule to make themselves feel secure in the first place.

C: Change in activity
Similar to the above, a sudden request to change activity (e.g. "come off that computer and eat dinner") is an incredibly common meltdown-trigger in autistic children. Suddenly having to divert attention away from an activity we are focused on is incredibly uncomfortable for most autistic people- the feeling is really quite visceral. 
Before I was diagnosed in my teens, my parents learned by trial and error that the best way to avoid deeply upsetting me with a sudden request was A. pre-timetabling activities, as above. and B. giving "wind down" phrases at intervals.
So, say, an hour before dinner they would say "Dinner's on, get to a point where you can wind down", then again at 1/2hr and 10mins. I knew I didn't have to respond to these cues (which could give me the same uncomfortable feeling) but would use them to get my brain gradually detached from the thing that was absorbing my attention.

D: Social
Many autistic people, even the extroverts among us (we do exist!) find socialising very exhausting. The difference is that so many of the social things a non-autistic person does on instinct are things we have to consciously think about and remember to do. A lot of brainpower goes into even a basic social interaction and that's tiring! We need an opportunity to get away and take a break from interaction in order to recover. Be aware of your daughter's energy levels when it comes to social events and interaction, and have a strategy available for her to take a break if she needs to.

E: A note on school vs home
School is going to be an even more tiring and challenging thing for your child than a non-autistic child; she is not only learning the academics, she is learning to navigate a complex social environment that doesn't come naturally to her. She will probably already be aware that open expression of her autistic traits isn't met with a positive response from her peers. She must learn to fit in and to pretend, in order to cope in this highly human-interaction-based arena. 
Home, on the other hand, is the safe place.
You are the safe people.
You are much more likely to experience the fallout of the challenges she faces during the day than the people or things that actually caused the difficulty. If the metaphorical fizzy drink bottle has been shaken to breaking point at school, she might well just explode at home as soon as she feels secure, or as soon as a tiny trigger tips her over the edge. It's rarely about what you think it is- and this is where it differs so much from the tantrum, as giving her "her way" will do nothing to stop the explosion. 

The best thing you can do for her is ride it out, keep her safe (from hurting herself or other people), and when she has calmed down and recovered her strength do your best to work out what has caused the problem and how to avoid it in the future.

Extra AS-specific calm-down tip:
One thing that does help me and many other autistic people during a meltdown situation or the buildup to one is deep pressure- e.g. wrapping oneself tightly in a duvet or being under a weighted blanket.
As a bonus, since fabric is soft and constricting, this should help avoid her lashing out and hurting herself or others if she is out of her own control. It is very difficult, as I expect you have already found, to get through to someone who is having a meltdown, but it might be worth asking her when she is calm if she thinks wrapping herself in a blanket might help her feel better when she is finding things too much and then having one hanging around the house for her to use at need.

Wishing you both the best!
Don't hesitate to ask any questions and feel free to PM if that's easier.

Emma x