How can I support my autistic daughter with night-time anxiety?

[fruitfly3]

Not sure what I hope to get from posting, but possibly just some understanding from others who ‘know’.

My beautiful 9 year old daughter is autistic and struggles with anxiety, socially, school, puberty and change. She finds the world more and more difficult as she grows up - sometimes things that were possible 6 months ago just aren’t any more. I booked a weekend away with my friends which is coming up in May. I’ve had nights away before which were ok, mostly for work, but this is the first two-nighter in a long time. My daughter is very clingy at night - wants me to settle her even if her dad has read to her. She gets more anxious around bedtime - often starting to feel sick (she’s severally emetophobic) and needs a lot of deescalation from me. I’m her safety, her patience and her comfort. No one else comes close. She’s absolutely gutted about me going and says I just can’t and that she won’t cope. I went for a meal last week and she got so upset my husband had to call me. I know i should just not go, but it makes me so so sad. We’ve been trying to get therapy for a year now and it’s almost impossible. With some tools I know that she could manage much more. Would love your experiences of nighttime anxiety and how to better support her.

Does DD take any medication to help with sleep?

They don’t work for all but some ideas some people find helpful include: a 2 way monitor, dream pad pillow, weighted blanket, human sized teddy or pregnancy pillow, brushing, meditation, tents, various lighting, worry book, doodle book/pillowcase, white noise, music, audiobooks, various apps or ear plugs. Some find the elastic band technique works. Or an adapted version of gradual retreat.

Does DD sleep in your bed or her own bed? (No judgement. I have a teen that still spends some time in my/DH’s bed. Although these days when he needs us in bed with him we get in his specialist bed with him rather than him get in with us.)

What wider support is DD receiving? I’m not just meaning therapy but wider support. Often, if wider anxiety levels are higher, nights are harder.

Is it the same school nights verses the weekend? (If you was going to go away maybe a Friday night is better rather than a sun night).
Does she have a good relationship with her father and trust him?

Is it possible to buy a film she wants to see or a hr later in bed etc so it’s equally a special treat for herself. Can you lend her a mobile so she can text you if neee be? 9 is a difficult age.

School for ASD kids is very difficult I literally couldn’t go out for 2 years plus at a similar age but now I’m a “free agent relatively” so once happier in herself it will be easier and she won’t have to “control you”

Good luck

Some excellent advice from PP.
I completely understand and it must be so difficult but sometimes , especially for work, you do need to be away. It may also do you some good though I know you must be so worried.

I changed schools ( teacher) when our autistic daughter was young and she didn’t have anything to do with me for 3 weeks as if I was a different person.

Does she respond to Social Stories at all? A bespoke one may help.
Is it that she thinks something might happen to you when you aren’t home or just that she can’t manage?

Writing worries and negative thoughts on post its and literally swatting them with a fly swatter ( nats negative automatic thoughts) or putting them into a Worry monster’s mouth may help.

Our daughter found a beanbag and Slankets helpful and a lava lamp and rainbow maker. She also had one of those large photo pockets on the back of her room door filled with happy family photos, favourite people, positive quotes etc.
Would a Build a Bear with a recording of you saying good night help?

For puberty our girls enjoyed the book Hair in Funny Places, Babbette Cole. There’s What’s Happening to Ellie for a more factual guide.
Hope you find some strategies to help. Have you looked on your LA Sen local offer for support groups. Look out for the Teen Life programme NAS suitable from age 10 for parents or the Cygnet Programme.

Thank you all - this is so helpful and generally affirming. To answer a few questions. She sleeps in her own bed (goes to sleep at least) and sometimes comes to us in the night. She doesn’t take any sleep medication and actually doesn’t have any issue sleeping. It’s just that she panics without me there and the panic takes over. She is very disciplined about not going to bed too late, gets very upset if she does and gets worried she’ll be sick or feel poorly and that makes it worse. I honestly can’t imagine any sleep aids, or anything other than me, helping her. She has support at school (soft starts and some 1:1 support) and we’re about to start therapy to build her toolkit (and ours). She has an iPad and can message us (only has us and her grandparents on there). The only way I can describe it is like I’m a security blanket. She’ll always want me to check in on her but sometimes she’ll drop off when her Dad has finished reading to her - she’s just happy I’m in the house and feels safe enough with that.

Some people find medication to aid getting to sleep helps with anxiety going to bed even if DC sleep well once asleep.

Has DD ever had a sensory OT assessment? For some, the worry about feeling &/or being sick is related to or exacerbated by sensory difficulties.