burnout/ headaches how to best support young person as a parent

[Agatha1111]

hi there, my daughter who is on autistic spectrum has those massive headaches, today she couldn’t feel her head or tongue, became non verbal. Only 15, I don’t know if anyone has been in the same situation - please could you let me know how to best support her? Just had her mocks this week, I feel it could be to do with a huge stress and sensory overload.

[NotJim]

Hi Agatha1111,

That sounds intense, I'm sorry to hear you're daughter's having a hard time.

My partner has stress headaches sometimes which can be pretty painful. The lack of feeling in tongue and head sounds like something to raise with your Doctor to get checked. It might also be a symptom that occurs before a migraine called Migraine Aura where some people feel a numbness/tingling in their hand or arm which can spread to the face, lips and tongue. Apparently this can also affect speech.

If she's feeling stressed and overwhelmed, it could be helpful to make sure she has things to look forward to (in home and/or school) that can bring her comfort and let her feel safe. That could be somewhere to calm down or activities that help her feel centred. Would it be helpful if she had somewhere in school to calm down after the exam has taken place? For example, perhaps it could be worth asking the school if they can provide a quiet room for her afterwards for 15-20 mins, with a member of staff to check on her when the time is up.

Having a chat with her to find out what she might find helpful would also be good, so that she feels like she's part of the decisions and has control.

It's really good you're checking out what to do. I've seen parents supporting their children through exams and it can be hard work. The time feels really slow, but also whizzes by very quickly. Lots of encouragement, love and patience are the best things. I would always say the grades are less important than wellbeing, and it's good to keep a perspective on things. In the UK schools will say GCSEs are the most important exams you will ever take, but then as soon as you get to A levels, they will say these are the important exams you will take, and so on. Overall, it's the learning that's the most important bit, the exams are just a summation of that.

I hope this helps a bit, and wish you both all the best

[Agatha1111 in reply to NotJim]

Thank you so much. I appreciate you take time to write this message, it made me feel very supported too. I absolutely agree about the exams, and will take her to a GP tomorrow. Thank you again 😍

[Bee-bop]

Hi Agatha,

My daughter gets the headaches too and really struggled at school.. We had a very reduced timetable and did not sit science. She was extremely overwhelmed and stressed by it all. One time I took her guinea pig to school so she could do her drama exam. I knew if I could calm her system and offer a reward, we'd be ok. We also had a plush toy she could have in her bag to stroke to calm her system.

My big thing to help the headaches is make sure your daughter is drinking enough. When we are using our brain a lot we can dehydrate and I know my daughter wouldn't drink at school. Also, try to stay calm yourself. You know your daughter. Mine goes into flight, flight, freeze in these situations and has run away so, if something like this happens make sure you are reassuring . I would also say let's just see how far we can go so that she didn't feel bad if we didn't manage the exams. It is so much pressure.

Re: going non verbal. Again being calm and reassuring is my go to, it's ok, I can see you're overwhelmed etc lets try to do something to help you feel better. I will sometimes just find a silly video and start playing that. Usually guinea pigs or dogs.

Did you manage to see the Dr, what did they think re not being able to feel her tongue?

[Agatha1111 in reply to Bee-bop]

Thank you for sharing your experience and telling me about your young person. Sounds like you have found the way! Yes, the doc thinks it is just the headaches, we were given headache diary and will revisit.

[Bee-bop in reply to Agatha1111]

No worries, Good luck to you both regarding the exams 👍

[Saju21]

before my daughters add dx she had years of this combined nausea and dizziness. Referred to paediatrician who was so fussmussivecthatvitcwas JUST anxiety teenage girl issues (like these aren’t real). After dx I went in asd awareness training and became aware of vestibular issues. Referred to audiology and after two separate tests dx with vestibular migraines. So she now has migraine meds- preventative and acute.

School stresses her - loves lessons but totally isolated from her peers so school has agreed she only attends for lessons.

She decompresses fully when returns from school generally no homework. It has helped. She use to visit school nurse almost daily now we just collect her or recognise it’s a bad day and she doesn’t go in. We do have CAMHS involvement who wrote to school and said she needed flexible attendance.

Good luck

[Agatha1111]

Hello Saju21, thank you for responding and I am glad to hear that your daughter has finally received a diagnosis and preventative meds.

I will definitely ask about migraine when we are finally with paediatrics.

I also feel strongly that the flexible attendance is a good idea, as my daughters sensory overload is on another level .

Thank you again for sharing

[Saju21 in reply to Agatha1111]

Agatha the thing to emphasise is vestibular difficulties is associated with autism ie it’s the vestibular dysfunction which is the cause of migraines/ dizziness but unfortunately other than exercises you can only treat the symptoms. But she was dismissed as ‘silly anxious stressed teenage girl’ rather than either gp or paedetrician even consider there was a physical cause.

[QuietButBold]

As now an adult; a few reflections on my teenage headaches experience:

15 is a full-on busy time in the life of any young person, add into the mix being on the Autistic spectrum and learning about what works best for you in that regard, particularly during transitions such as completing adolescence, can be a lot to balance. Not to mention adapting to all the social side of things. I used to be glad now and again, perhaps of a weekend, of some time away from my peers, doing some outdoor activity - 1-to-1 with an older relative (the activity was not that important, rather, it was the change of scene / pressure / air - more relaxed time spent with the more predictable adult - a shopping errand, a chore around their garden, a walk, fishing, DIY, etc.). These days I would describe that as timeout from masking in good company.

When I was was a teenager; my Mother insisted that I attended an Opticians every 2 years to check glasses were not required - even if I didn't complain of anything eye-related (I felt that was a good thing - considering the volume of study demands). One Optician highlighted to me the good practice of; learning to build in the habit of changing your focal length every so often when studying a textbook or reading a computer screen for lengths of time (by looking out a window and focusing upon e.g. the bricks of a building across the road). If nothing else, it often helped you realise how tired you had become and when you might benefit from a break and a walk to the kitchen to get some more water.

By the time I was aged 17 I had come to value a pair of sunglasses e.g. when traveling as the passenger in a car / bus / train - when I could be prone to a sort of strobe effect - from light peeping / moving / flickering between passing fences / stands of trees / stationary vehicles etc.

In situations where I might be too self-conscious about wearing sunglasses - to help control my experience of changing light levels - I sometimes was more in favour of carrying with me a hat with a brim or a peak (baseball hats survive life in your rucksack well). Even today, I still find it helpful to tuck a tennis visor into my book bag if I intend to spend much time studying in or visiting a library / museum / gallery where the lighting may not suit me well).

My hairstyle could also play a role in perpetuating a headache. From about age 10, if I had long hair, I would favour an "Alice" style headband over a ponytail. If School guidance required a neater hairstyle - I would wear a loose plait by each ear instead of one at the back of my head.

I didn't realise until a young adult; that in Spring I could be bothered by tree pollen "hay fever" (hello, sinus headache!).

Some Autistic people, like me (at all ages), can benefit from feeling a change of air on their face - more so than some other people seem to do so (lunch outdoors in the breeze, or sit inside near an ajar window when working / studying). If that isn't practical - I sometimes generate some refreshing breeze across my face via a desk fan / battery or USB operated portable fan, or a folding paper hand fan (top tip: a ponytail band doubled around the end of the closed paper fan protects it well in your bag). I am not sure I fully understand the mechanics of this ...but it is helpful in my experience.

These days I have learnt to carry tap water with me everywhere. It has taken me decades to realise I just don't always get the awareness of my body's thirst message. To combat that; I automate the audible / visual prompt (e.g. pause mid-morning for "Elevenses" beverage etc.) - by using a notification from the calendar app on my smartphone (Breakfast, Elevenses, Lunch, Afternoon Tea, Dinner, Supper). To a non-Autist that might seem pedantic ...all I can say is that it works for me!

I hope, over the last couple of months, your Daughter has been able to devise / discover so strategies in support of managing her headaches too.

[Agatha1111 in reply to QuietButBold]

Thank you so much for your response. It is so nice to hear your experience. Thank you so much for sharing it. A lot of helpful tips to take away and to try! I appreciate that.