New diagnosis HELP>>>>>>

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

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

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