wife is high functioning autistic, practical advice please

Share your ideas about the practical side of caring.
my wife is my world, literally the most amazing person i've ever know. she finally got her diagnosis of high functioning autistic (after waiting 16 years!!!) i would love to know how i can best help her now i know what her condition is. our local carers help is rubbish. she got herself referred to our local autistic service which i think will be great for her but i want to make sure i'm on board. i've put in place a clear calendar which she can use to record daily events, she also got herself a wrist band that allows her to communicate discreetly to me whether she is able to communicate or not, we;'ve begun work with the national autistic society and they have provided her with some great resources,

so i have some questions:

1) how can i help her during a "shut down" when she can be non verbal and isolated. she will struggle with sensory overload and pull away from everyone. is there anything i can do to help her feel safe? talk quietly? short sentences? provide comfort items?

2) how can i help during autistic melt down? when she becomes totally overwhelmed and "explodes" in stead of shutting down? I try to keep her physically safe and let her "wind down" without judgement and use plenty of reassurance. is there any more i can do?

3) can i get anything that will help her get out and about? she relies on my car or her dads car to go out but if there's a busy car park she cant get out of the car, id love to be able to keep her socialising but i need something practical to make it happen. she cant use public transport due to sensory overload and social anxiety. what schemes/resources are available in the uk?

4) is there anything else i've missed that could be helpful?



thanks for any advice, it's really appreciated
I know the rules about Blue Badges are changing soon, getting one of these, and being able to use the wider spaces the disabled spaces have, will really help.
Hi David,
What a lovely, understanding husband you are.
TT
Do you like reading? If so there are a couple of books I could recommend you re developing a strategy for preventing where possible "Catastrophic events," as they used to be referred to ( meltdowns and freezing) and for coping with one if if does happen. As your wife is verbal and able to communicate when relaxed and at ease, she may be able to contribute to these plans herself.

Has your wife had an OT sensory assessment yet? These are different from an ordinary OT assessment which deals with hand rails and ramps etc so make sure it's the right sort. In some areas you can self refer/ refer a partner or family member but in some areas you need a professional to make the referral. They will help assess your wife's sensory differences/ needs / challenges and help you both put strategies in place to help her self regulate better.

Re your questions:
) 1 how can i help her during a "shut down" when she can be non verbal and isolated. she will struggle with sensory overload and pull away from everyone. is there anything i can do to help her feel safe? talk quietly? short sentences? provide comfort items?
Every autistic person is different, for S he needs time to be quiet and comfortable. A darkened, cool, quiet room, lying down, snuggled under a fleecy blanket if possible. Sometimes he needs to sleep, sometimes low key, calm reassurance and a cuddle is needed.

What causes this to happen? If it's a combination of stimuli then a low arousal approach as for S would be best. If it's a particular stimuli that pushes her into shutdown then tackle that e.g. Earplugs/ ear- defenders/ sound cancelling ear-phones for noise or sunglasses / hat for too bright/ to much visual stimulation etc etc
2) how can i help during autistic melt down? when she becomes totally overwhelmed and "explodes" in stead of shutting down? I try to keep her physically safe and let her "wind down" without judgement and use plenty of reassurance. is there any more i can do?
Obviously prevention is best to reduce frequency , though even with the best of plans in place it's impossible to prevent them happening altogether. The wristband communicator sounds great. Teaching yourselves to recognise the warning signs so that you can act before the meltdown occurs.
If the meltdown happens, then keeping both of you safe. Give her time and space. Reassurance from a distance. As you say, short sentences. Each one starti g with her name etc Movement often helps e.g. pacing, hard-work e.g. throwing a big exercise ball about.

S used to drop to the floor, so I bought him a crash mat - he throws himself on this, it's safe and also gives him the proprioceptive feedback his muscles and joints need. In the past he has thrown a gym ball about, had an inflatable punch bag thing and used a trampette.

3) can i get anything that will help her get out and about? she relies on my car or her dads car to go out but if there's a busy car park she cant get out of the car, id love to be able to keep her socialising but i need something practical to make it happen. she cant use public transport due to sensory overload and social anxiety. what schemes/resources are available in the uk?
As BB points out she should be able to get a blue badge from beginning of 2019., so you'd be able to park nearer the entrance. Does she drive? If she gets full rate mobility PIP she could have her own car on the mobility scheme.

Some towns have a Safe places scheme in place. Vulnerable carry a card with their name, person to contact in an emergency etc on and shops, libraries etc are registered with the s heme and display a poster, offering support and a safe place if needed.

Timing visits to places when they are quieter . Selecting smaller supermarkets etc. Looking out for relaxed reviewings at cinemas and theatres. Be more selective of where she goes e.g National Trust is very successful for us. Plan outings in fine detail and practice together before she goes alone. Make sure she has sensory strategies in place.

Have places that you/ she visit regularly staff will get to know her. A smiling, familiar, regular face who knows you and welcomes you helps.

Some places have an autism strategy in place - a visual or virtual guide etc

S used to really struggle with hair cuts. The hairdressers are great, they book him in at a quiet time, the same person always does his hair, he always sits on the same place and they follow the same routine each time. Brilliant.
4) is there anything else i've missed that could be helpful?
The calendar sounds great. Visual strategies are good. Plenty of exercise, plan for enough relaxation/ rest at intervals through the day. Have good routines in place. Make sure she gets enough sleep ( you too.)

Melly1

Ps getting too hot, internal sensations ( needing to pass wind, burp, o/b) etc can trigger anxiety in S. Consider some triggers may be internal. Hormones etc

Read books by autistic adults to give yourself insight in to her experiences.

Look after yourself.
i hadn't considered a blue badge! but i can definitely see the advantages of having one, it would mean less of a crowd close to the shops and an easy exit if things get to much. my wife did a bit of research and has applied for a card from the local authority to use as proof of her invisible disability which i think will help her confidence in going out an about knowing she can show it and that should "hopefully" settle any upset if people don't understand her. i am closely following the autism friendly hour scheme for supermarkets as that will be incredibly helpful.

My wife has also go a little notebook and she is slowly recognising triggers which she is writing down so i can read them too. We are both looking forward to reading our book when it arrives, its all about female autism and aspergers. and she got herself (through the national autistic society) a little stack of alert cards that have her name on it, my number and a brief explanation of her difficulties.

It's all about the team work!!!