Alice in Neverland--Autistic, Hypersensory or Neurodiverse

Cristalle

I hope to make this a safe space for those with an autism spectrum condition, sensory processing issues, and other neurowonderful (thanks Amythest Schaber) expressions.

I was diagnosed in May of 2016, was late diagnosed with Asperger's in 2008. I have not found any women on the spectrum currently blogging and am reaching out.

Some of the issues we may face are:

Time to process all the medical bafflegab--executive functioning. Having someone with you to take notes. Planning for self care and family care, eating right, showing up on time (hard even when you're well.)

Sensitivity to sounds, lights etc during the testing and treatment (alexithymia makes it difficult to describe levels of discomfort and pain). Sensory integration dysfunction, tactile defensiveness (hard to be touched).

Drugs and their dosages, often too toxic for us. Coming off HRT, back to the teenage mood swings. Discomfort with fabrics and tags (not looking forward to special bras, dealing with irritation as I already get eczema and rashes. Reactions to chemo and rads.

The stark contrast between support for cancer patients and adults with autism, especially the older women (I run a support group for the latter.). I'm also part of a Facebook closed group called Aspies and Menopause.

If you would like to join this thread, please do. I also speak and write French and German (yes, I'm a word nerd and hyperlexic.). Bienvenue und Willkommen!

Finally, a little humor. Which condition has more acronyms, autism or cancer?? I won't use ASD here because it means something else on this forum. I got ASC from the UK and vastly prefer it.

Faithfully yours, Cristalle

Ottawa Canada

ElaineTherese

Hi Cristalle!

Not on the spectrum, but my 13 year old twins are. They are semi-verbal and struggled while I was undergoing treatment. One of my sons became anxious and depressed. My other son used passive-aggressive behavior to act out. (Things would disappear from the house and the yard -- he was either 1) putting them in the trash can or 2) throwing them over the fence in the yard, into our neighbor's yard.) I hope you get some responses from other members on the spectrum, and that you continue to find coping mechanisms during your journey through this thing we call cancer.

Cristalle

Thank you for your reply. You autism moms are great! My surgery is Friday, so this is a busy week. It's been a strange journey, deciding who to tell. Did not tell my ex for instance. This is my first blog ever, what a time to start!

ElaineTherese

Best wishes for a successful surgery! Just got a phone call from my sons' special needs camp. One of my sons decided he'd had enough of canoeing, jumped out of the canoe, and swam to the dock. OY!

katykids

wishing you luck. Katy here. On her phone. And not so great at it. I I am mom to 15 year old with autism.Nearly a year out from my BMX laat year. Lots of luck to you!!! Xo

Cristalle

Thank you for the well wishes and prayers. Lumpectomy is June 17 and I get to ask my questions tomorrow. Wore dark glasses and ear plugs at the stereotactic biopsy which really helped.

Waiting for the social worker to contact me as I don't drive. Will need rides if my pathology report indicates need for radiation.

Journaling has really helped me stop ruminating. I tend to black-and-white thinking so I ask for opinions from those who have been there before me

CatintheCorner

Hi, I am also on the autism spectrum; I was diagnosed with Asperger's syndrome in 2012. I was hoping to read about or share experiences with others on the spectrum going through breast cancer treatment, and I came across this thread. I was surprised at how little information there is concerning autism and coping with serious medical issues such as cancer and glad to find this thread, though sadly it doesn't seem to be very active.

I was diagnosed with breast cancer in late 2016, underwent surgery (lumpectomy), chemotherapy, and now radiotherapy. It's been really tough, as much due to the disruption to my life as the actual treatment. But there is light at the end of the tunnel, as I shall finish my treatment in about a month's time. Some of the issues I faced were:

Extreme anxiety after finding lump in breast - imaging the worst, feeling sick and not being able to eat or sleep, disruption to my routine and my life. I couldn't cope and had to seek help - I was prescribed antidepressants.

Hospitals - having to wait for long periods in a busy hospital with creaking doors and trolleys. Doctors always in a hurry and not being patient with me when I ask questions or rite things down, too much verbal information to take in at once. Confusion and uncertainty. I wish there had been more written information and instructions. For anyone going through this, it's a good idea to have someone with you to help you, and always have a notepad and pen with you to write things down. Hospital staff may have heard of autism but probably aren't going to be very knowledgeable about it and won't know how it affects you, so it's a good idea to carry an autism card, and some written information how it might affect you with regards to the hospital and treatment.

Surgery - I had to stay in the hospital for surgery and found that difficult because of the constant chatter of the others in the ward and their visitors or their TV, people coming in and out and looking at me, not able to sleep, lack of privacy. Also, really boring. Eye masks/sunglasses and earplugs are a must.

Scans - the MRI scan is really loud and noisy - recommend earplugs for that. Also, having to lie down, not move, having people touch me and not being able to see what's going on was difficult. I found it difficult to relax and stay still. I like to see what's going on all the time, but every time I raised my head to look, they told me to lie down again. If someone touched me unexpectedly, I would flinch, or jerk my body. I would advise informing the staff of your sensory sensitivities and ask them to keep telling you what they are doing, it helps a lot and I find I can tolerate it a lot better if I know what's going on and what's coming.

Chemo - not as bad as I had been anticipating, didn't have too many side effects. I felt whacked the first 4-5 days after each session, also some bowel movement difficulties and fatigue. I was fidgety during the treatment and the nurses kept thinking there was something wrong.

Radiotherapy - I'm currently undergoing radiotherapy. When I was in the CT scanner for the simulation, I knew I wasn't supposed to move, but they kept on touching me round the head, neck and shoulders to position me, and I couldn't see what was going on, and got quite stressed. I moved when I wasn't supposed to or tried to lift my head so see what was going on and the staff got annoyed at me and shouted at me. I got upset and had to calm down and try again later. The radiation machine is very uncomfortable as it emits a loud high-pitched noise, and they have two really bright fluorescent lights that shine into my eyes like two suns. I now come to the sessions with earplugs and sunglasses and it's a lot better. No serious side effects so far, apart from really itchy skin and burns after the first session. I've now had 9 sessions and feel a bit tired but ok but worried about side effects and becoming too tired.

Well, that's an overview of the difficulties I faced and how I found ways to cope with them. To anyone on the autism spectrum unfortunate enough to have to go through this, my basic advise would be to let doctors and staff know about your autism and how it affects you, and always keep a pen and notebook handy to write things down, take a family member or partner to appointments if possible. It's not always so easy for us to communicate our thoughts and emotions to others, and keeping a diary or journal may help to process the information and emotions you are feeling.

Cristalle

Thank you Cat for posting, and for being so honest. I am all here but am in remission! When I started this thread I only heard from autism moms (bless them but I want to hear from autistics with BC themselves).

I shared a lot of your experiences, the lumpectomy and radiation parts. I have found the cessation of HRT very hard (I am 57 now and had to quit suddenly which no autistic should ever do). No anti-hormonal drugs but I am ER and PR positive so just on vaginal estrogen for atrophy, and melatonin to sleep. My estrogen patch was my only mood alterer and I miss it a lot. Have never used antidepressants but have been offered them since Asperger Dx in 2008.

If you are menopausal, please join a FB group my friend Tina Brooks started, Aspies and Menopause.

Please share again, there may be more of us on here. Last year at this time I was in complete turmoil, so grateful my one-year mammogram is clear. Keep journaling so you can look back on your progress, and don't lose hope. It does get better if you can manage the sensory overload. I found my iPod really helpful in the biopsy (more pain after than the LX!

By the way, you meant 'touching' not 'toughing' which you may wish to correct.....

Cristalle

Cristalle

Oh and use a safe moisturizer to prevent the radiation blistering. I have scar tissue so no longer wear underwire bras, just camis and sports bras. I have gotten rid of all products with parabens, phthalates and parfum.

I burned after 13 of 16 radiation treatments, wish I had stopped at 13. My alexithymia and poor interoception (the 8th sense) mean I don't always feel pain the way NTs do, and do not know how to express it when I do. Sometimes we suffer greatly before reporting it, my endometriosis and polyps were like that!

Please write again, I will try to get this thread active again even though I am better

CatintheCorner

Thanks, Cristalle, for replying to my post, I am glad to hear from you. I'm pleased that you have made a recovery and are in remission. I am 46 years old, was diagnosed with Asperger's 5 years ago. I'm ER and PR positive, take injections to shut down my ovaries and hormone therapy drugs (tamoxifen), so I've been catapulted into premature menopause, lots of hot flashes and putting on weight, but thankfully the antidepressants seems to be helping with the mood swings - though I plan to come off them when I finish my BC treatment. I am stage Ia, so my prognosis is good and I expect to make a full recovery, though the worry will always be there.

Thanks for the advice on the moisturizer - I use a moisturizer prescribed by my doctor, so I know that it's safe (though I'm not so good at remembering to apply it regularly). Regarding pain, it's strange I don't always seem to feel it as much as other people do, but on the other hand, something hard or scratchy against my skin can be unbearable, like those felt tip pens they use to mark you for radiotherapy!

Cristalle

Effexor is what I was prescribed, but I was warned by other ASD women that it is very addictive. I take sage, very concentrated, for the night sweats and severe body odor. A Vogel Menopause Female. I know it is working because when I forget it comes back.

It didn't wear a bra all last summer, have taken all the wires out, wear mostly camis and sports bras now.

If you can go bra free at least until radiation is over I highly recommend it. I froze cabbage leaves, a tip I found on here, and took one every day in a cooler to apply. I had small tattoos for alignment in the machine. No markers except day of LX. I'll friend you if you wish to write privately

CatintheCorner

I take Sertraline 100mg. It can have some quite sever side affects when you come off it, so I plan to come off it sooner than later, as soon as I finish radiotherapy. On the other hand, it has reduced my anxiety and I no longer get mood swings. and I worry that these might be back in full force as soon as I come off Sertraline.

Thank you for the sage tip, I shall try that. I live in a hot country and sleeping at night can be difficult.

I haven't had any major side effects from the rads so far, apart from fatigue, a redness of the skin and the burns on my first session (not on the breast being treated) which have now healed up. I only wear a bra to go out.

What is "A Vogel Menopause Female"?

Cristalle

Hi, that is the brand of sage I use. Here is the company site with some reviews. I started on two, one morning one evening to cope with the sweats. As soon as I stood up in the morning I got a flash. Mind you it was summer. I am down to one at bedtime now

http://www.avogel.ca/en/herbal-remedies/menopause-...

Watch out for scar tissue developing after radiation. We discussed it and lymphedema a lot on the Ottawa Ladies thread. Feel free to read.

C

Cristalle

Hi, that is the brand of sage I use. Here is the company site with some reviews. I started on two, one morning one evening to cope with the sweats. As soon as I stood up in the morning I got a flash. Mind you it was summer. I am down to one at bedtime now

http://www.avogel.ca/en/herbal-remedies/menopause-...

Watch out for scar tissue developing after radiation. We discussed it and lymphedema a lot on the Ottawa Ladies thread. Feel free to read.

C

CatintheCorner

Thank you for your advice and help. I shall look out for that sage brand, if they don't have that same brand where I live I'm sure I can find an alternative. I've been reading extensively about all possible side affects of the treatment and I do tend to imagine the worse, but so far it hasn't been too bad.

CatintheCorner

I must say that this site has been extremely useful and informative. The doctors aren't too good at giving information and don't always have to time and patience to sit and and answer my questions (I do tend to get anxious and ask a lot, or need things repeated), and then there's always something I didn't get to ask, or things I thought of later.