5th Congress Autism-Europe
Articulos / Proceeding
Autism-Spain

THE RECOGNITION AND MANAGEMENT OF SYMPTOMS ASSOCIATED WITH THE MENSTRUAL CYCLE IN WOMEN WITH AUTISM

Summary

Any female between puberty and the menopause is eligible to suffer from conditions associated with the menstrual cycle.Women who have autism should be no different to any other women in regards to susceptibility to conditions associated with the menstrual cycle,but from personal observation,what is different in women with autism is the way in which they react to symptoms,and demonstrate distress.

Women who have autism do not always show evidence of period pain in the usual ways - they do not bend forward, or place a hand over the area of discomfort. For some,the marked facial pallor, restlessness and excessive talking indicate pain, with the symptoms subsiding for 3 or 4 hours after a mild analgesic is given.

The most common condition noted in relation to the menstrual cycle is Premenstrual Syndrome (PMS, formerly known as Premenstrual Tension or PMT).There are approximately 199 signs and symptoms that may be associated with PMS,and which should be able to be recognised even with women who are unable to communicate effectively. A simple chart can be used to determine whether or not symptoms and signs are related to the premenstrual phase of the menstrual cycle,and might therefore respond to management regimes suggested for PMS.

Symptoms which may be associated with the menstrual cycle in women with autism The only relevant reference I was able to find was in Temple Grandin's book,"Emergence Labeled Autistic" pp72-3. Quotes from Temple's book describe the picture very vividly. "With the onset of menstruation the panic attacks increased in intensity "." I had even more difficulty getting along with the other students" "These nerve attacks, complete with pounding heart, dry mouthing, sweaty palms,and twitching legs, had the symptoms of stage fright, but were actu,ally more like hypersensitivity than anxiety " "The panic that worsened as the day progressed... by nine or ten o'clock at night the anxiety subsided". "Thinking back on this time of my life, I realise that the anxiety I experienced was cyclical. During menstruation the anxiety lessened.But during the late fall when the days became shorter,my anxiety attacks worsened". "Also,the anxiety attacks subsided when I was sick and had a fever ".

Another woman with autism had two groups of symptoms associated with the menstrual cycle.The first group of symptoms were easily recognizable, when the period was accompanied by facial pallor as well as the restlessness,overactive talkativeness or wanting to lie down,and all symptoms including the facial pallor decreased for 3-4 hours after being given mild pain relief. The talkativeness and restlessness without facial pallor took much longer to be recognized as still being due to period pain,only confirmed by noting the cessation of symptoms when given paracetamol (she is on many medications, and would not know what each medication is meant to do,so it can't be claimed to be a psychological response). It is interesting to note that mild pain relievers such as Paracetamol are enough to presumably reduce the pain to manageable levels - for women in the general population who have period pain severe enough to cause facial pallor, mild analgesics neither reduce the pain level nor the facial pallor. Is this because the pain has an emotional overlay, or is it due to the severity of the pain? With women with autism,is it that the emotional overlay is not present, or is it that the mild analgesics reduce the pain level enough for the women to cope with the pain - persons with autism are claimed to have a higher pain threshold,so is the pain just reduced to below this higher pain threshold?

The second group of symptoms were even more difficult to cope with, and took a while to identify.One carer describes her as "impossible", and I couldn't think of a more descriptive and accurate diagnosis,even though it's not a medical term. She was noisy, pushing and grabbing aimlessly, wanting to eat all the time,walking or pacing around, talking or shreiking excessively, couldn't settle to sleep at night (usually had no difficulty getting to sleep), waking between 5-7 am and unable to go back to sleep (usually slept in until at least 9-10 am or later, sometimes as late as 1 pm!), wetting the bed, seizures more frequent. One year ago a Specialist commenced her on a hormone tablet which has the same dose right through the pack, with her taking 4 months of tablets before having a break for 5 days, in which time she has a short period. Within two months of starting the treatment, one of her carers described her as being calmer, and we have noted the same at home.We are able to enjoy her company, and take her out again - while she was suffering from such intense premenstrual syndrome, life was not pleasant for anyone, least of all for her.

I was also consulted by the mother of a 25 year old woman with autism.The woman has always been reasonably difficult to manage, and has been on Haloperidol since 14 years of age, but her mother had been unable to convince treating doctors that the woman was more difficult leading up to her period. We decided to start the woman on a hormone tablet that has the same dose all through the pack, but her mother elected to stop the tablets at the end of each pack to allow for a short period. Within two months of starting the treatment, her mother described her as much calmer (interestingly, it is the same term used for the woman above).

As these were the only references and information I could discover in relation to women with autism (or disability in general, for that matter) and conditions associated with the menstrual cycle, we have to go back to general information about the menstrual cycle to try to estimate the effect on women with autism.

History and Introduction

Women have menstruated since time began, but with the universally held belief that menstruating women were not just "unclean", but downright dangerous and evil, it is not surprising that women have suffered in silence for centuries. During the Middle Ages it was believed that menstruation demonstrated the essential sinfulness and inferiority of women, and therefore menstruating women were forbidden to attend church or take communion. Some myths are still perpetuated, with parents forbidding their daughters to take a bath or shower, or wash their hair during menstruation - originally these taboos may have been important in the days of cold bathrooms and no hairdryers, with the recognition that women are more prone to infections in the days before the period (more viral in the days leading up to the period, and more bacterial during the period. Dalton 1969 pp36-9, 135).

Dalton(1994 pXVI) states that it was not until 1970 that the word menstruation was allowed to be used on the BBC, or printed in newspapers. Menstruation-related disorders of a non-surgical nature didn't rate highly in medical journals, so it probably wasn't until the advent of women's health centres that information was made more readily available to the general public.With increased awareness of the suffering of women in relation to the menstrual cycle came attempts to discover more about the condition and it's causes in order to be able to offer effective treatment.

By far the most common condition associated with the menstrual cycle is Premenstrual Syndrome or PMS,defined by Dalton (1 994 p4) as "The presence of recurrent symptoms before menstruation,with complete absence of symptoms after menstruation." Initially the condition was named Premenstrual Tension or PMT, but this term failed to encompass the multitude of symptoms now recognised as being associated with PMS (To reduce confusion, I will consistently use the term PMS).

A Professor of Human Metabolism at the University of London even went so far as to call PMS the world's commonest disease (Dalton 1994 pXIII), with a street survey of 500 women in Britain carried out by the Women's Nutritional Advisory Service in 1986 indicating a 73.6% rate of PMS(Stewart 1994 p94). The first cases of PMS were reported by Dr Robert Frank of New York in 1931 (Stewart 1994 p2), with the term PMS first appearing in the British Medical Joumal in 1953 (Dalton 1994 pIX).

Many conditions related to the menstrual cycle are prevented or minimised when ovulation is suppressed. In the past, ovulation was suppressed naturally by the many pregnancies women endured, but now with women deferring childbearing until later,and having fewer children, more menstrual cycles are potentially associated with ovulation,and the consequent associated signs and symptoms.

Women with autism don't tend to become sexually active,or become pregnant, so the only likely cause of ovulation suppression is hormonal treatment.

The hormonal basis of the menstrual cycle

The menstrual cycle involves the complex inter-linking of different organs - the

hypothalamus and pituitary gland, both located at the base of the brain, the ovaries and the uterus.The hypothalamus is a particularly complex nerve centre which acts rather like a telephone exchange to integrate nerve impulses and hormonal effects from elsewhere in the body. Neurotransmitters and neuromodulators influencing the menstrual cycle include noradrenaline, dopamine, serotonin, melatonin, endogenous opiates (enkephalins and endorphins).

Gonadotrophin releasing hormone from the hypothalamus stimulates the pituitary to produce follicle stimulating hormone (FSH) and luteinising hormone (LH) which then stimulate the development of follicles in the ovary. The developing follicles produce increasing amounts of oestradiol, an oestrogen, which increases until a sufficiently high level for 12-24 hours triggers ovulation.

After ovulation, the ripened follicle secretes both oestradiol and progesterone.Unless pregnancy occurs,the follicle degenerates after 12-16 days, the resulting fall in oestradiol and progesterone no longer able to maintain build up of the lining of the uterus, so this lining is shed in what we know as a period.

On average the menstrual cycle lasts 28 days from the beginning of one period to the next, but can be as little as 21 days or up to 42 days and even more. In adolescents, cycles tend to be more irregular until the regular cyclical pattern is established. Regardless of the length of the cycle, ovulation usually occurs 14 days before the next period starts.

Conditions associated with the menstrual cycle

Conditions which may cause distress related to the menstrual cycle are - menstrual distress or menstrual magnification (symptoms occur throughout the cycle, increasing before the period, and often have an underlying medical/gynaecological cause); menstrual headache (starts about half a day before the period, and lasts 2-3 days, helped by a small dose of oestrogen 3-4 days before the period is due); primary dysmennorrhoea or period pain (stomach cramps, pale face, nausea or diarrhoea for up to 24 hours from the beginning of the period, helped by prostaglandins and non-steroidal anti-inflammatory drugs such as Ponstan and Brufen. Brufen is also available as a suppository.); and secondary dysmennorrhoea or period pain in women who have previously had painless periods (usually has an underlying medical-gynaecological cause such as polyps, fibroids, and endometriosis).

The cause of PMS

General consensus now seems to favour the concept that sufferers have normal hormone levels but are unduly sensitive to the normal swings in hormone levels throughout the cycle (Stewart p3).

Symptoms of PMS

There are said to be up to 199 symptoms associated with PMS (see list), some very similar, but even so there is a diverse range of symptoms.Some women have similar symptoms each menstrual cycle,others vary from cycle to cycle, even though the underlying cause is the same, because of the numerous inter-related factors determining symptoms.

Stewart (1994 p 91) states " We asked 1 000 drivers who suffer from PMS whether their driving ability mas affected premenstrually. An astotiishitig 76.9% said their drivitig ability decreased before their period. Many women stop driving before their period is due, as they have previously had so many accidents premenstrually. The two main factors that seem to affect driving ability are lack of concentration and poor coordinaion. Amazingly, the women report that as soon as their period arrives, their driving ability returns to normal.' I am not personally aware of any women with autism who are drivers, but this study still has implications for women with autism premenstrually - they may drop or break things,or bump into things.Those who have very strong attention to detail may show frustration and irritability if they can't get fine movement as precise as usual, and road and safety awareness may be reduced.

Some find their allergic symptoms, asthma or epilepsy worse premenstrually, others notice cyclical sore throats, rhinitis, sinusitis, pharyngitis and laryngitis (due to the effect on hormone-sensitive tissues in these areas).

Having a hysterectomy doesn't prevent the premenstrual symptoms occuring,unless the ovaries have also been removed - it is just more difficult to judge when menstruation would have occured. Other factors have to be noted, such as breast enlargement and nipple changes, fluid retention,weight gain, acne, nervous symptoms such as irritability, and bladder or bowel changes.

In spite of numerous articles found on Medline, Psychlit and many other searches, it soon becomes evident to the reader that there is no consensus on definition, cause, symptomatology or management.

Determining whether or not a woman with autism is suffering from PMS

Of the numerous references I read, the paper by Budeiri, Po and Dornan (1994) was the most significant, giving a clear overview of the numerous studies carried out. Initially they planned a quantitative overview (meta-analysis) of treatments for PMS, to try to identify the most appropriate treatments. However, they soon realised that this meta-analysis could not be carried out, because of the disparate methods used by the many clinical triallists to identify and classify women with PMS, and to measure treatment outcomes. Having identified this difficulty,they decided to systematically survey all the scales used to investigate women with PMS, before proceeding to the meta-analysis.

With an extensive search,Budeiri et al identified a surprising 350 clinical trials, 38 Proceedings of Symposia,and 6 theses.There were 199 symptoms and signs reported within the 65 different questionnaires and scales, but only 47 of the 65 contained sufficient detail for systematic classification.

Budeiri stated: "The wide diversity of methods used in the diagnosis of PMS is obvious from the results of the present survey. Two distinct aspects are symptoms to define the syndrome and assessment of severity... Whether a patient is deemed to be suffering from PMS or not is determined by the premenstrual score over an appropriate number of cycles." Budeiri also commented on calendars and diaries created for daily recording of PMS symptoms as being valid, reliable and practical.

Many of the scales rely on the woman recognizing and being able to describe symptoms, and being willing to record on an on-going basis. For many women with autism, none of this is possible due to many not being able to communicate verbally or non-verbally, particularly when abstract thought is required. In addition, they often suffer pain or discomfort but don't indicate this in easily recognizable ways. Any recording of symptoms would have to be carried out by parents or carers relying on their powers of observation.

It is obviously impractical to have a list of 199 symptoms to record. Budeiri et al calculated the frequency with which a symptom was included in the scales, by counting how many scales included a particular symptom.The most common 36 symptoms are ones which should be observable to a greater or lesser extent, or deducable by a parent or carer who knows the woman with autism fairly well, and who is sensitive to changes that might occur.To that list of 36 I have added symptoms which I have noted from personal observation of women with PMS, or which other parents or carers have commented on, and which seem to have improved with treatment for PMS.

If the above items are all included in a questionnaire asking a parent/caregiver or other observer to indicate whether or not the woman with autism has suffered from those symptoms in the previous 3 months,an affirmative answer would indicate the need to progress to the further stage of a monthly diary to establish whether or not the symptoms were actually related to the menstrual cycle. I have used an interval of the previous 3 months, as this is not too far back for memories to fade completely, but long enough to ahow for 2 or 3 menstrual cycles. If one cycle is longer than usual, or without ovulation and therefore no associated hormonal changes, there will probably still be at least one cycle with ovulation and therefore hormonal variations.

The next question to ponder is how many items scored as positive should be taken to need a monthly diary follow-up? If items are rated as mild, moderate or severe, then any one item in the severe column or perhaps 5 items in the moderate colunm could be considered to merit a monthly diary.

What makes PMS worse?

Physical/emotional stress, disturbed or insufficient sleep, long intervals without food, excess caffeine, alcohol especially red wine, lack of exercise, smoking (could passive smoking also

have this effect?), long distance flights. All of these tend to upset the body's hormone control systems, controlled ultimately from the brain.

Signifícance of PMS for women with autism

As shown above, in the premenstrual period women may lack concentration or be more clumsy than usual, as well as "just not feeling on top of the world". It would be wise not to start a new training programs when a period is nearly due, as the chances of success will be lessened. It would be better to have the program ready to implement, and start after the period starts, to give the program the best chance of success.

Similarly,it would be unwise to plan a stressful event such as a new social situation, going to the dentist,or going into crowded areas.

Management of PMS in women with autism

There are chapters and whole books devoted to numerous management regimes said to be of great benefit to those suffering from PMS - vitamins and minerals, herbal preparations, royal jelly, ginseng, garlic tablets, oil of evening primrose (not for use by those who have epilepsy), homeopathy, reflexology, physical manipulation of the spine and joints, acupuncture, behavioural therapy to teach coping strategies - many have not had any formal evaluation to assess effectiveness, others have had limited evaluation but the results have not been very significant. In addition, it is difficult to estimate the placebo effect which has been noted in earlier short term double-blind trials.

Other activities said to help a little are relaxation, quiet music, having a bath, having a gentle massage, rhythmic exercise such as walking, swimming or cycling. Extra rest, not necessarily sleeping, but just lying horizontally, appears to help by increasing renal function.

By far the most impressive, and simplest of management regimes was the 3 hourly starch diet, which keeps the blood sugar more stable, and therefore has less secondary effect on hormonal variations. Katharina Dalton in her book talks about women who had extreme problems because of PMS, were sent literature about PMS and who were asked to go onto the 3 hour starch diet while waiting the 3 months for their appointment. Many had tried treatments including hormones without success, but by appointment time 3 months later, many were already starting to feel better, and continued to improve in the longer term. Starches include bread, biscuits, crispbreads, potatoes, flour, oats, rice, maize and rye, and should ideally be eaten everdy through the day, starting within one hour of waking until an hour before going to sleep, also through the night if the person wakes. This diet should continue right through the cycle, but should not cause weight gain if the high calorie suggars and chocolates are eaten less because of reduced food cravings.The 3 hour starch diet is said to be more effective in raising a low blood sugar level than a high fibre carbohydrate diet.

Minimising tea, coffee, cola, chocolate, and alcohol (especially red wine), and reducing wheat and yeast helps some.

Katharina Dalton recommends daily progesterone injections and suppositories for women with severe PMS - not all agree that line of treatment is either necessary or effective, and it's not one I would want to prescribe for many women with autism.

I have personally had success with 2 women with autism where I prescribed a hormone preparation to suppress ovulation, using the same low dose formulation right through the pack. Not all women will benefit from hormone preparations, and not all combinations suit all, but some certainly seem to benefit, so it is worth a try if other lesser treatments haven't been beneficial.

Conclusion

PMS and other menstruation-related disorders can affect all women, but the symptoms are more difficult to interpret in women with autism, particularly those who have difficulty communicating their discomfort.

References

* Budeiri DJ, Po AL, Doman JC (1994) Clinical trials of premenstrual syndrome: entry criteria and scales for measuring treatment outcomes. British Journal of Obstetrics and Gynaecology Vol 101 pp 689-695

* Dalton KB,Holton D (1 994) PMS: The Essential Guide to Treatment Options Thorsons London

* Grandin T, Scariano M (1 989) Emergence Labelled Autistic Arena Press California

* Halbreich U, Endicott J, Schacht S, and Nee J (1982) The diversity of premenstrual changes as reflected in the premenstrual assessment form Acta Psych Scand 65,46-65

* Moos RH, Kopell BS, Melges FT et al (1969) Fluctuations in symptoms and moods during the menstrual cycle J Psychosom Res 13, 37-44

* Moos RR& Leidennan DB (1 978) Towards a menstrual cycle typology J Psychosom Res

22, 31-40

* Porter JF (1978) The control of human fertility Blackwell Scientific Publications. Melbourne Australia

* Stewart M., Stewart A., Abraham GE (1994) Beat PMS Through Diet.The Medically

Proven Women's Nutritional Advisory Service Programme Vermillion London

In the past 3 months has the person suffered from any of the following? Please tick appropriate boxes	Mildly	Moderately	Severely	All the time	Some of the time
Breast tendemess/soreness/pain
Breasts larger/veins more prominent
Weight gain
Stomach blown up/clothes tight
Swelling of fingers or legs
Numbness/tingling
Increased appetite
Food cravings
Drink more tea/coffee/fizzy drinks
Smoke/drink more alcohol
Decreased appetite
Nausea/vomiting
Stomach pains or cramps
Constipation
Back pain
General aches and pains
Headache/migraine
Pimples/skin problems worse
Chest pains/asthma worse
Allergies become worse
Eye problems
Ringing in the ears
Blind spots/fuzzy vision
Dizzy or impaired balance
Other physical symptoms worse
Feels cold/skin cold to touch
Skin hot or sweaty
Heart beating faster/feels as if pounding
Sleeps more
Sleeps less/restless/broken sleep
Passes less urine
Passes more urine or passes more often
Wets self unexpectedly
Picks skin/bites nails
Irritability
Tension
Wants to be alone
Unsociable/avoids social action
Loss of interest in activities
Crying easily/feeling tearful
Anxiety
Mood instability/swings
Concentration difficult or reduced
Tiredness
Confused
More forgetful than usual
Restless/jittery/impatient
Anger/temper outbursts
Less efficient
Sad or seeming down in dumps
Clumsy/more accidents
Sexual interest changes
Pain during intercourse
Feel insecure
Overtalkative/noisy
Brood over events
Feel passive
More affectionate
Seizures more frequent/worse
Other:
Other:

Questionnaire by Dr. M. Kyrkou

Please do not complete this form if you have already completed and forwarded a copy of this questionnaire. Tick all boxes that are relevant. Put xx if details are not known.

Details about the Person:

Year of Birth: Survey No.

Country of residence:

Australia If other please name country

Does the person have a disability? Yes/No

If YES, please state known diagnoses

================================================================

Methods by which the person communicates:

Communicates well verbally

Communicates fluently using:

communication device

Limited speech

Very límited speech

Points

Signs

Limited ability to communicate using communication board/device

Has difficufty communicating effectively

Person's ability to understand:

Understands everything

Limited understanding

Difficulty knowing whether or not the person understands

Periods:

Not yet started

Started age years and months

Time from earliest sign of breasts developing or hair growing underarm or in pubic area until first period: less than 6 months

6 to 24 months

More than 2 years

Frequency of periods: Regular, approximately every _______ days or

irregular varying from between ____ and ______days from the beginning of one period to the beginning of the next.

Length of period: Bleeding usually lasts _____ days.

Presence of pain with periods:

Never

Occasionally

Pain with most pedods

When the pain occurs:

Before the period starts Duration of period

First few hours of period Throughout period

First 1-2 days of period After period

Duration of the pain:

For a few hours

For 1 to 2 days

For 3 or more days

How do you know the person is experiencing pain?

What seems to make the pain worse?

What seems to ease the pain?

Have you noticed any other symptoms that seem to be related to the periods?

Has the person had any of the following?

Hysterectomy Yes/No

Curette Yes/No

Tubes tied Yes/No

Lining of womb stripped Yes/No

Removal of ovaries Yes/No

The long-acting hormone injection Depo-Provera Yes/No

Other surgery related to the brain or reproductive system Yes/No

If YES, please specify

Benefits noted from any of the above (state which)

Disadvantages noted from any of the above

Use of the Pill:

Never

Previously

Currently on the Pill

Brands of Pill tried:

Name of Pill:

Benefits

Disadvantages

Name of Pill:

Benefits

Disadvantages

Name of Pill:

Benefits

Disadvantages

Name of Pill:

Benefits

Disadvantages

Details about nearest blood relatives, if known:

Mother:

First period aged __________

Frequency of periods: Regularly every ________days or varied between ___________ and __________days from the beginning of one period to the next.

Length of periods ____ days.

Presence of pain:

Before period

During period

After period

What seemed to make the pain worse?

What seemed to ease the pain?

Sister 1:

First period aged __________

Frequency of periods: Regularly every ________days or varied between ___________ and __________days from the beginning of one period to the next.

Length of periods ____ days.

Presence of pain:

Before period

During period

After period

What seemed to make the pain worse?

What seemed to ease the pain?

If more than one sister, please attach the above details for other sisters on a separate piece of paper, and return with questionnaire.

Tick names of medication the person has taken. Similar medications on same line	Before first period started	Since first period started
Phenobarbitone, Prominal, Primidone, Mysoline
Dilantin, Phenytoin
Zarontin, Ethosuximide
Cionazepam, Rivotril
Tegretol, Teril, Carbemazepine
Epilim, Valpro, Sodium Valproate
Sabril, Vigabatrin
Neurontin, Gabapentin
Lamictal, Lamotrigine
Ospolot, Sulthiame
Valium, Diazepam, Ducene, Antenex
Mogadon, Nitrazepam, Alodorm
Aspirin, Solprin, Spren, Ecotrin
Codeine, Codral Forte, Codalgin Forte, Dymadon Forte, Panadeine Forte
Panadol, Paracetamol, Panamax, Dymadon P, Paralgin, Tylenol, Tempra
Ponstan, Mefenamic, Naprosyn, Naproxen
Periactin
Vallergan, Trimeprazine
Phenergan, Promethazine, Benadryl, Polaramine, Zadine, Histalert, Avil
Teldane, Terfenadine
Amoxil, Amoxyciliin, Moxacin, Alphamox, Cilamox, Fisamox
Ampicillin, Alphacin, Austrapen, Ampicyn
Bicillin, Abbocillin, Cilicaine
Bactrim, Septrin, Resprim, Urolucosil
Erythromycin, Eryc, EMU-V, llosone, E-Mycin, E.E.S, Erythrocin
Flagyl, Metronidazole, Metrogyl, Metrozine
Other antibiotics not usted above
Dexamphetamine
Ritalin, Methylphenidate
Haloperidol, Serenace
Melleril, Thioridazine, Aldazine
Imipramine, Tofranil, Melipramine
Tryptanol, Amitriptyline, Endep, Tryptine
Allegron, Nortriptyline
Stelazine, Trifluoperazine
Serepax, Oxazepam, Murelax, Alepam
Alprazolam, Kalma
Ciomipramine, Anafranil
Temazepam, Normison
Prothiaden, Dothiepin
Doxepin, Sinequan
Surmontil, Trimipramine
Prozac, Fluoxetine
Aropax, Paroxetine
Sertraline, Zoloft
Nardil, Phenelzine
Parnate, Tranylcypromine
Moclobenide, Aurorix
Lithium
Tolvon, Mianserin
Chlorpromazine, Largactil
Fluphenazine, Modecate, Anatensol
Neulactil, Perlcyazine
Tetrabenazine, Nitoman
Risperidal, Risperidone
Naltrexone
Ponderax, Fenfluramine
Other, please name
Other, please name
Other, please name
Other, please name
Other, please name