Tuesday, November 25, 2014

In the red tent

Today I am going to write about puberty and girls, specifically one girl who has autism and is now 15.

Before you get all cross with me, if I thought there was ever a chance that Grace could read this, then I would be asking her to help me write it. Because this is something that Mums (and Dads) need to know.

And before you get squeamish - I'm not going to be writing about the practicalities of managing a period when you have autism and a learning difficulty. You can read all about how our ABA school team managed that here on  "Girls, Autism and Menstruation" which I have put up as a permanent page on the top of my blog.

Our excellent Behavioural supervisor Ann-marie Donovan has written a full guide to how she and her team created a task analysis that taught Gracie how to handle that aspect of her life with privacy, dignity and independence. (which started 2 whole years before her period arrived)

No, this is about that other aspect of being a teenage girl. The maelstrom of hormonal changes which can completely change how she is experiencing Autism.

The "Red Tent" I refer to in the title isn't the kind you read about on "Upworthy"
that is; the practice of "banishing" women to the outskirts of the village during menstruation which sadly goes on today in less developed countries in Africa and Asia. This and the lack of adequate protection and sanitary disposal affects the lives of many women and I'd encourage you to read up about it Here and Here.

No, the "Red Tent" I imagine is a very comfortable one. In my mind it is full of cushions and orthopedic designed recliner chairs with back massagers built in. There is a fridge full of Ben & Jerrys icecream, a medicine press stocked up with Ponstan and a discreet but well stocked bar. (for the Mammys)


It would also have full access to Netflix and an on-demand cable provider with good wifi. There is soft mood lighting with optional white noise sound effects via state of the art headphones and a hot press full of hotwater bottles in fluffy covers. Climate control would be available in zones to allow those experiencing a hot sweat to cool off while others cosy up under feather and down duvets.
There would be a number of marble tiled bathrooms, each with a step in sunken spa bath and rain shower. And black toweling dressing gowns on a warming rail.
Communication would be by text or instant message only (with a 'do not disturb' option)

For too long, women and girls have been encouraged to the point of expectation to ignore and overcome their periods. With discreet protection came an obligation to roller-skate in fountains while wearing short shorts. We are supposed to do gymnastics, compete in diving competitions and give the winning presentation at that board meeting.


Depictions of being curled up in a ball groaning wearing a bulky black tracksuit that barely disguises the giant surfboard sized sanitary napkin are as rare as red ink in period advertising world.
Women have fought to be considered equal and of course I embrace that. But sometimes you just want to put on your black yoga pants and retreat.. to the Red Tent.

And for the last 12 months I have observed that Gracie would like to do that.
12 months ago her medication stopped "working". She wasn't sleeping well every night, her OCD came back and she started having MASSIVE tantrums.
We tried different meds, we tried more meds and in the summer, by accident we tried NO meds. And it made no difference. Well, she lost 9 kilos but experienced exactly the same level of extreme behaviours and mood swings so we decided to keep her off the meds, for good.

Her psychiatrist (who happens to be one of the world's most respected Autism Experts) was perplexed. She told me there is next to no research into how female body chemistry and medication interact and exactly ZERO into how this impacts on Autism and related conditions.


So I began to take data. (the refuge of the behaviourist!) Rather than the complex ABC rating scales that our Psych had given me, I used a simple traffic light system that I could fill in every few days. Green meant it was a good day on recollection, nothing to report. Yellow or Amber (depending on which pencil I had to hand) was an okay day, with maybe a few incidents of screaming or behavioural loops like OCD, and Red was an all out awful day. I also tracked the days of her period in red marker over the shading and drew a blue moon for the nights of sleep disturbance.



Because Sleep Disturbance has been the hardest part of this. Grace was never a good sleeper pre-meds but when this new phase started she began to have 4-6 nights of almost no sleep. She would pace, jump, bang her heels into the wooden floor and on one particularly awful night she got stuck in a loop kicking the radiator. By loop I mean an incident of compulsive behaviour that she is powerless to stop. She wasn't "Self Harming for Purpose" as it says on the rating scales, but just unable to stop performing an action that was leaving her bruised. She wouldn't eat much other than ice cream at these times and she seemed to have difficulty going to the loo. Oh and she would cry a lot. Real heart racking sobs that could go on for hours.

After a bad night she would be so exhausted  that she would sleep the next night, but on day 3 it would start all over again. As you can imagine it was really upsetting. Not just for me being kept awake by the noise. But because I can't seem to do anything to help her to alleviate her distress.
So I changed the environment (my other standby solution) I covered up her radiator with cushions and padding. I moved her bed and put a jumbo beanbag under it to absorb noise and covered the floor with mats, and a couple of old single mattresses inside duvet covers.

I installed a one way video baby monitor that I bought on a buy and sell site and then attached a rubber seal all around her bedroom door to stop it rattling. I even bought a few extra memory foam bathmats for her ensuite to stop her stomping on that floor all night and bruising her feet.
And then, when she was in the "bad zone" I just put her in her room to rage safely.

3 months into taking my data I began to see a pattern. By happy chance school had gone back and I made arrangements to meet a good friend for lunch. One of those friends I have had for years who I can catch up with every 6 months and chat like we saw each other yesterday.
During our lunch we discussed our respective teenage daughters (she has a son with Autism and a very grown up neuro-typical daughter) and I had a revelation.

Maybe this wasn't just about Autism. Maybe this was about BECOMING A WOMAN.

You see, my friend's daughter, like many mid-teens also has rather horrible periods. You forget this when you are 46 but those first few years of finding a rhythm can be bloody awful (pardon the pun) Cramps like a boa-constrictor is crawling around your fallopian tubes, anxiety, hysteria, tension and a tendency to burst into tears.
It was when she told me that her daughter, who plays a popular team sport, gets sent off at least once a month for "taking the head off the ref" (as we say in Ireland) that I realised what was going on with Gracie.

She doesn't have the words to pick a fight with me or her brother once a month. She doesn't have the language to express her anxiety, anger or depression appropriately. She still can't really describe pain.

So she stomps, cries, rages and slams doors. Her anxiety and tension manifests as OCD. This and her body temperature fluctuations and tummy cramps make it impossible to sleep. And since it was all new to her, she didn't know what to do about it.

You know that feeling when you have a horrid cold and are in a lot of pain and you go to the Doctor to be told that it ISN'T JUST A VIRUS, IT'S A REAL INFECTION AND YOU NEED ANTIBIOTICS!
And you feel so much better before you've taken a single capsule just knowing, that you were not just being a giant sook?

Well, Grace doesn't have that. Because she doesn't understand why this little body she has lived in comfortably, as comfortably as her Autism has allowed her; has suddenly decided to up and change on her.
She was able to take the extra body hair, the body odour, even the monthly inconvenience of bleeding in her stride.
But she simply doesn't have the receptive or expressive language for all this other stuff.
 
Grace is staying off behavioural meds for the forseeable future. We are trying the pill next month to see if that will reduce her cramping and make her more comfortable. So we have a "swallowing a pill in one go" program task being planned by her school behavioural director.

Good news is the number of green squares in each month are increasing. (we all have our 'bad' months)

If you are still with me, and you have any particular insights on this, I would love to hear them. Especially but not limited to other females who are on the spectrum and who have experienced a change in body and mind chemistry as a result. There needs to be a lot more research into this for all of us, autistic or not. Because it is not always about Autism.

Tonight she sleeps. xx



3 comments:

Petunia said...

Mother Nature is a nasty aul bitch really. All the girls in my family suffer from dysmenorrhea so I gladly jumped at the chance to have my hysterectomy! I still get brutal mood swings every month but no pain thankfully. Ibuprofen and ponstan used to take the edge off but you still had moments you felt like your stomach contained a breakdancing toxic porcupine... Hopefully the pill will help Gracie. Does she have a microwave bean bag she can use for her tummy too?

K.Line said...

My cycles have always been difficult (hormones affect me greatly - especially in terms of pain and physical discomfort). I think it's awesome that you've considered what a trialsome shift this must be for Gracie. It is for all of us - and we can complain and commiserate with each other in a way she cannot. Not to mention that her not sleeping must be flat out awful. I feel like I'm going crazy if I go two nights on less than 7 hrs of sleep.

I really feel for her. I think that heat on her stomach and other parts of body (cuz for me I hurt elsewhere, like legs and upper back), massage (if she'll go for it) and some tea (kinds with herbs good for cramps and the like) might help.

K.Line said...

Also, my "neuro typical" (is any of us typical??) 14 yo has pretty nasty periods - headaches, terrible cramps. But the most outrageous part is her mood. She's new to this and she cannot control herself. She has veritable tantrums. So I do think that some of it is about getting used to the experience and learning how to accommodate her body within it. I do believe we all adjust, some of us with more success than others, others more quickly, and much of the success depends on trial and error and luck over time. Strikes me that, what works for you and female family members is likely to work for her too because biochemistry of this sort is often familial.