Almost eradicated in the 1940s with the use of cod liver oil given to children and encouragement to get out in the sun and play, it was so rare in the 1960s, when I had it, that when my two cousins had it apparently made the papers. My own case didn’t but I expect it drew attention from the GP and welfare services and had some relationship to me being taken into a welfare centre program for at risk children from 6mths old until I was 2 and a half.

I had apparently had jaundice at 6 months old (you can see I’m ‘tanned’ in the pic at 4mths old, in fact I’m actually a very pale person and don’t tan) and colic and recurrent infections but I was never told about the Rickets. Probably because in the 1960s such cases would instantly have flagged ‘neglect’. By 2 and a half I had spent my weekdays being fed and in the sunshine of Northcote Day Nursery (at that time, 1965, it was a welfare program for at risk children, today it is a regular nursery) so if Rickets had merely been an episode in my infancy then all that should have remained would have been the bone deformities.

But at 2 and a half I was in a three day hospital assessment at St Elmo’s hospital. According to my father and my aunt, I was there primarily because of queries as to whether I was deaf or had leukemia (as I didn’t respond and had easy bruising, bleeding gums and my eyelashes coming out). The result was I was diagnosed as psychotic, infantile psychosis, which is what autism was considered to be in the 1960s. Was Rickets unrelated?

According to my father and aunt there were other developmental delays. I struggled to stand or walk (not surprising with Rickets) but was also late with toileting, which I managed by the age of 3 and a half. I remember I had shoes I knew as ‘click clacks’ from the sound they made. I had them from around age 4 to 6. They were heavy leather school shoes with press down ‘caliper’ style metal buckles that didn’t leave any room for my feet to twist. Not sure what did the trick but I obviously came to walk fine.

The developmental issues went together with physical health issues. I remained on fairly constant antibiotics for recurrent infections and as an adult was diagnosed with the primary immune deficiencies, food allergies and food intolerances I’d apparently had all my life.

The Q angle of my knees in the above picture was 25 degrees. The normal Q angle for a female child aged 7-8 is 7-11 degrees.

At age 9 my teeth were horrendous and I required fillings to most of my teeth. My mother was told that I would probably have false teeth by adulthood and that I had a calcium metabolism problem. She, herself, would tell people that when pregnant with me she had lost all her teeth so there may have been some truth in this. With her being an alcoholic when I was born, she was likely already D or calcium deficient but its equally possible that with two cousins developing Rickets in the 60s when I also did that it may have been more than just us both being born to alcoholic mothers. They may well have already had their own metabolic disorders. With being on supplements since age 9-11 I got to keep my teeth into adulthood though they were yellow and pitted and so I have veneers covering them top and bottom so instead they present a ‘picture of health’.

At age 9, I was the second shortest girl in the school. I may have been 3ft 3″ as I remember being 3ft 3″ in grade 3, so 39 inches, the average being 47. So was put on zinc, C, multivitamin-minerals. As a result of grew to 61 inches (5ft 1″) by age 12 with associated severe bone and joint pain. and was put onto zinc, vitamin C and multivitamin-minerals and three years later I was normal height at 5ft 1″ but with all the expected severe growth related pains of sped up sudden growth. I was also diagnosed with language processing disorder and the treatment of me changed accordingly and the combination of the nutritional interventions and communication interventions meant that by age 9-11 I went from 90% meaning deaf to only 50% meaning deaf and moved accordingly from echolalia to producing progressively functional communication. I had been put through intensive ballet training from age 5

to age 9 which hopefully improved bone strength for me but it certainly train me to support my spine with well developed thigh and lumbar muscles and taught me to turn my legs out which hid my now longer bowed legs. With spinal degeneration in my 40s, I’m glad of the supplements and ballet that might otherwise see me now with a far higher level of issues than I’m tackling.

As an adult I was diagnosed with a range of food allergies and intolerances, among which was casein intolerance. Had I been unable to digest cow’s milk in infancy (I was left with cow’s milk bottles, not breast fed) this may well have as easily contributed to my Rickets as having been reportedly left in my bedroom for my first 6 mths, so without adequate sunshine.

In spite of inability to have milk products, in adulthood, I had a diet that was rich in D and calcium and was perplexed that in spite of being on fish oils, eating chicken and fish and spending adequate time in the sun daily without a hat or suncream that I was D deficient. I went on to vitamin D drops and this normalised in my next blood results by the time I was diagnosed with breast cancer.

My case is only an anecdotal one but an extensively documented one nevertheless. Rickets, once an eradicated disease in modern societies is now back in epidemic proportions thanks to over zealous reactions to fear of skin cancer and lifestyle changes. Children who were once playing out in the sun without hats or sunscreen, play indoors or under sun shades whilst slathered in sunscreen. Children now rarely play in the street or walk to school.

Sure, skin cancer is real, but most skin cancers are basal cell carcinoma, essentially cosmetically harrowing but won’t kill you, squamous cell cancers generally start as harmless solar keratoses that are commonly picked up and gotten rid of before they develop into potentially deadly squamous cells, and melanoma, undoubtedly deadly, accounts for only 6% of skin cancers. Other allergies, immune problems, life long back pain and spine degeneration. Sometimes we need to get the overview, not fixate on a single detail. Its about balance.

With advancements in the study of the health issues of children with autism, new studies are finding a range of gut, immune, metabolic anomalies related to developmental delay and associated neurological, sensory perceptual, sensory integration, communication and motor planning development issues. Combine this with a set of personality traits predisposing a child to respond ‘autistically’ to chronic stress, disability or information overload and once those responses have become neurologically patterned, automatic and integrated into the child’s identity, strategies, adaptations and responses to the environment by age 3-5 and you may well have a recipe for a presentation and diagnosis of autism.

An article in The British Medical Journal, Vol 1, N.o 1379, in 1887 (yes, I did mean 1887, not 1987) mentioned impact of Rickets not only on bone development but on ‘derangements’ of the spleen, liver, heart and digestive system and urged for medicine to not overlook the neurological impacts of Rickets reported as far back as the mid 1800s, which included epilepsy (seizures, including absence seizures that may look like staring spells), Hyperesthesia(multiple sensory hypersensitivities), muscle weakness, tentany(causes involuntary muscle contractions and twitches) and ‘mental backwardness’(ie developmental delay, information processing disorders and learning disability).

It was still being discussed in 1939, 4 years before Kanner would coin the term ‘autism’. To quote from a recent article in Psychology Today:

“To my knowledge, the neuropsychiatric symptoms of rickets have not been studied in the modern era. However, at least two old papers have addressed it, both published before Kanner described autism in 1943. Both papers describe ‘weak mindedness,’‘feeble minds,’‘mental dullness,’ unresponsiveness and developmental delays. Even more intriguing, both papers report that the mental condition in rickets improved with vitamin D.”

you can read the whole article article“>here.

Whilst vitamin D levels are essential to normal brain development, the brain’s development, resilience and nutrition also depend on the gut (colon), immune, detox (kidney), blood sugar balance and enzyme production (pancreas).

“The VDR (vitamin D receptor) is present not only in tissues that regulate serum calcium, including the small intestine, bone cells, and kidney, but also in essentially all tissues and cells in the body, including brain, colon, breast, prostate, pancreas, heart, skin, skeletal muscle, monocytes, and activated T and B lymphocytes (essential parts of immune system function)” (1, 20–22, 24). http://www.jci.org/articles/view/29449

With the near eradication of Rickets in developed countries by the 1940s, all this history of knowledge and its potential relevance to autism was probably lost until around the 1970s skin cancer campaigns added lack of sun exposure to the lives of children who had never “done” cod liver oil as grandmothers had, often with dread and off the spoon, in the 1940s and 50s.

Today premature babies who would have died in the old days of daily cod liver oil, commonly survive. Yet many are born with D deficiency and in spite of this are given heavy vaccination regimes that such an undeveloped, unregulated immune system would perhaps be far more at risk of being overwhelmed by. Vitamin D deficiency impairs glutathione metabolism, which is essential for detox function. In a more heavily polluted society than in the 1940s and 50s, those with D deficiency could today more easily become further neurologically compromised through toxins they can’t detox from heavy metals and other toxins (probably including salicylate, a natural plant toxin) at the rate of most children.

Add to this a lack of breast feeding, lack of good bacteria in our now pasteurized milk and plants selectively bred to have higher and higher levels of the natural plant toxin, salicylate (because it deters insect attack) and you have a range of further exacerbation to gut and immune health in what may already compromised child. Then there’s the question of no standard testing of infant’s ability to digest lactose or casein so those who would also be at risk of Rickets that could be picked up before it wreaks havoc. There is also subclinical Rickets and inherited causes of Rickets.

The physical signs of autism are already widely noted and the similarities with vitamin D deficiency in Rickets are very strong. The differences may well reflect some of the additional flow on effects of D deficiency in our modern society. We have more polluted, toxin loaded, highly vaccinated, and more sunshine depleted infancies since the 1970s-80s sun phobic modern world than those writing about Rickets in the 1940s could have imagined.

But if children with autism had Rickets wouldn’t they all show the bone deformities so obvious in those with Rickets? It’s a great question. But keep in mind that gestational Rickets (during the mother’s pregnancy) means the fetus is still floating in fluid in the mother’s womb. The fetus has not yet sustained weight on their legs and the gravity effecting the arms in children with Rickets may be completely different whilst one has only ever floated, essentially weightless in fluid. What about the forehead? Do children with autism tend to have the protruding forehead seen in children with Rickets and associated with scull formation? The answer is, yes, people have noted this, particularly in Fragile X, one of the most common forms of autism. The flat feet in Fragile X is also a known sign of vitamin D deficiency. Large heads seen in people with autism also occurred in children with Rickets (known as rickety children) as per the following text from the mid 1800s:

“Scrofulous and rickety children are the most usual sufferers in this way. They are generally remarkable for large heads, great precocity of understanding, and small, delicate bodies. But in such instances, the great size of the brain, and the acuteness of the mind, are the results of morbid growth. Even with the best of management, the child passes the first years of its life constantly on the brink of active disease”. source:http://www.freefictionbooks.org/books/t/17810-a-treatise-on-anatomy-physiology-and-hygiene-re?start=191

In this (before Ricket’s was better understood) they wrote that when these precocious rickety infants then lost all their abilities and became ‘imbecile’ for the rest of their lives they believed the parents had essentially worn out the Rickety child’s brain. But the accounts do mirror what today is seen as ‘regressive autism’:

At what age particularly is excessive and continued mental exertion hurtful? Instead, however, of trying to repress its mental activity, the fond parents, misled by the early promise of genius too often excite it still further, by unceasing cultivation, and the never-failing stimulus of praise. Finding its progress for a time equal to their warmest wishes, they look forward with ecstasy to the day when its talents will break forth and shed lustre on its name.
But in exact proportion as the picture becomes brighter to their fancy, the probability of its being realized becomes less; for the brain, worn out by premature exertion, either becomes diseased, or loses its tone, leaving the mental powers imbecile and depressed for the remainder of life. The expected prodigy is thus easily outstripped in the social race by many whose dull outset promised him an easy victory”. source:http://www.freefictionbooks.org/books/t/17810-a-treatise-on-anatomy-physiology-and-hygiene-re?start=191

Further, Subclinical Rickets would not show the overt signs and would only be picked up on more careful scrutiny and testing.

In terms of autism, understanding of the prolific effects of early D deficiency may significantly advance the field.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Rickets, vitamin D deficiency and autism

The allergy clinic was run by qualified medical doctors. They injected me with a small amount of salicylate then measured the size of the histamine associated reaction. They had a scale of measurement for these bumps which went up to a score of 22. My score for salicylate allergy was 22. Ah, so that’s why aspirin swelled up my hands, feet, face and neck with edema!. I went home with a diet that was gluten free, casein free, no soy, low phenol, low salicylate and no refined carbs. I had no family support, no counselor. The withdrawal was horrendous. I made it and within 7-10 days I was becoming markedly better on all fronts. I remained relatively loyal to my low salicylate life for 21 years until I was 47 years old.

When I was 47 years old the immunologist told me in March that I was allergic to soy and peanuts which were both legumes. I went off all the legumes, tried some pea soup and had severe gastrointestinal problems (allergies sometimes won’t show until you are off all sources of the allergen before you retest). I waited a few weeks, tried pea soup again. Same thing. Legumes were out. Having unburdened my immune system (which was already neutropenic, IgG2 and IgA deficient) I found I could cope with higher levels of salicylate in foods. Without any retesting I decided I had overcome my salicylate allergy and two months later, by May my arthritis was pretty challenging but I paid it little mind, after all, I was 47. I was still only moderate in terms of the levels of salicylate in my diet. The following month I noticed a fast growing lump in my breast and was diagnosed with breast cancer.

I struggled to get veins for the IV and read that honey might raise them. Honey was an immune booster and high in antioxidants. It was also 18 times the high level of salicylates. But in my mind I decided 20 years of being low salicylate may have contributed to me getting breast cancer… after all, the high salicylate foods are the richest in antioxidants so I’d been off those for 20 years. I determined to make up for that and added stone fruits and berries back into my diet.

I made it through chemo with an immune and autoimmune system that was behaving very badly and dysautonomia. Neulasta came to the rescue, giving me enough white cells to finish chemo, antibiotics filled the gap, steroids reduced the level of autoimmune chaos, thrush dropped by throughout to laugh at my struggles and we tried to babysit the dysautonomia. The arthritis would back off in week 1 of each chemo cycle, but be back with a vengeance by week 3. On reflection this was probably because I was on liquid and soft foods for the first week and by default had probably reduced the salicylates that week.

Chemo ended after 12 weeks and I was onto Tomoxifen to keep any stray estrogen receptive cancer cells safely starved. My friend came over and we did an extraction of honey from our hives (yes, salicylate intolerant person keeping bees!) and I had so much honey I could have it daily. Bruises appeared out of nowhere, the worst of them a 12 cm! Capillaries in my feet were breaking, my joints were so bad at night I struggled to make a fist or walk for the first 10 steps. Next came hives and a mouth full of mouth ulcers. The sciatica I’d had since my teens came back. It was getting harder and more painful to walk. Finally I saw the GP and after not taking painkillers for back pain for 31 years I caved in and accepted NSAIDS and valium as a muscle relaxant.

Then came the pain storm. I’d had sciatica so horrid it made me depressed and cry but it had never caused paralysis. The stabbing pains and traveling dull aches suddenly hit in succession around my torso from my waist to my knees, circling me in what felt like a series of severely painful electric shocks. I made it to the bed and laid there shocked.

When I tried to roll over, get up, stand or walk, my lumbar and thigh muscles were ‘disconnected’. I could crouch but not get up though could walk my hands up my legs, pushing the knees, then thighs back into standing position and locking them there then climb my hands up the wall to straight out my lumbar spine in the absence of lumbar muscles to help me. I could shuffle but was virtually unable to raise my knees. I couldn’t get up stairs without using my hand to pull each leg up onto each step. These muscles had simply stopped talking to my brain. I wasn’t a paraplegic. The legs were working from the knees down and I still had bladder and bowel control.

I had severe back pain but now only the old sciatica I’d lived with since my teens. Slowly over the next two days the right thigh muscle began to reconnect, the day after that the left thigh muscle began to reconnect and then slowly the lumbar muscles began intermittently to work again. By day 4 I was able to get about with a cane to get me in and out of the car, up and down from seats and stop me falling when the muscles gave way again.

A trip back to the GP and he was concerned about the left leg. Asked to raise it the thigh struggled to respond. The muscle was far weaker than that of the right leg. He wrote a referral for an MRI with the queries: bone metastases? Transverse Myelitis?

Obviously, just out of chemo for breast cancer this was terrifying. Got the MRI and went to the GP for the results. We were so excited there was no sign of cancer nor TM or any MS related autoimmune myelin disorder. What there was was a degenerated spine with a plethora of anomalies to it.

The ligaments (Ligamentum Flavum and Posterior Element) that surrounds the nerves of the spinal cord had hypertrophy, meaning these had scar tissue that causes thickening and in my case this was constricting the space for nerves in the spinal cord and through the side recesses, essentially compressing the nerves. This hypertrophy is apparently associated with inflammation over the years so struggling with allergies and immune deficiency would not have helped. There was some minor arthritis damage to the parts that keep the vertebrae stable and two herniated disks with Schmorl’s Nodes protruding up into the vertebrae and out into the spinal cord, contacting more nerves there too. Together these things created different places of narrowing of the spinal cord – what is called spinal stenosis. By all accounts my spine showed enough reasons for sciatica and chronic back pain and enough contact and compression of nerves to account for some degree of intermittent loss of muscle function. The severe pain storm was most likely a reherniation of an already herniated disk spilling its jelly like but highly irritant contents out onto the nerves.

The GP was concerned about my left leg and told my husband that if it got any worse to call 000 and get straight to the hospital. I thought he was being melodramatic. He explained that if the nerved to that leg get too compressed they can be damaged and I can permanently lose the use of that leg and become wheelchair bound if they can’t save the leg through immediate back surgery to relieve the pressure on the nerves. I was referred to a neurosurgeon to discuss back surgery.

I went to a physiotherapist who was wonderful. She showed me how to manage my pain and stop it spiraling out of control. She encouraged me to use whatever was still working in order to keep getting the muscles to come out of spasm and reconnect.

But there was something perplexing. The level of pain and disability was obvious enough and to a degree it fitted the MRI scans, but from the scans the issue didn’t appear to be as urgent as the actual presentation.

I remembered my salicylate intolerance, how it caused me swelling in my joints, hands, feet and inflamed my veins. Could all the honey have caused such acute levels of inflammation that it dramatically exacerbated inflammation in the spine and contributed to such swelling that it caused more serious nerve compression than the scan itself already showed?

Three days of being low salicylate and I walked into the GPs office significantly improved. The pain had gone from 6-8 out of 10, 80-90% of my day to just 2-4 out of 10 around 15% of my day. We all breathed a sigh of relief.

The osteopath and chiropractor each explained to me how inflammation in soft tissue wouldn’t show on the MRI so that when swelling of soft tissue filled up the remaining space around the nerves they’d have been more compressed than showed in the scans. Mystery solved. Even talking to the neurosurgeon on the phone (telling him why I didn’t feel I needed to come and see him now) seemed to understand this.

I’d never have imagined that salicylate intolerance could have resulted in enough pressure around an already compromised spine to reherniate already damaged discs, triggering a storm of acute sciatica enough to cause paralysis of all the trunk muscles via the process of pain inhibition nor that that swelling in a spine already having contact and some compression of the nerves could push that to a point that I could have ended up having immediate back surgery to keep me out of a wheelchair.

When we imagine food intolerances are all about hives or a bit of joint stiffness, we have no idea what other vulnerabilities these may be pushing in already compromised body parts.

And now I know more about my back than I ever knew. I understand the journey that probably began with Ricketsthen immune and autoimmune disorders and the supplements in late childhood that had me grow from 3ft 3″ at age 9 to 5ft 1″ at age 12 and how these things made my back what it is, and isn’t. I understand that my trampolining days are over, gardening limited, that I must never just from a table or chair for the rest of my life if I value my mobility. I understand that long haul flights are likely never going to work for this spine unless I fancy running the gauntlet again with potential back surgery.

Am I upset? Are you kidding? I can walk again, go for walks, even dance enough to make myself laugh. It wasn’t cancer, it wasn’t TM or MS, I’m not in a wheelchair yet and if I’m lucky won’t be or at least have a surgery option if it comes to that. Change is of course hard, and I’m only 48 years old. I still think I’m lucky.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

A mysterious case of Salicylate toxicity and spinal stenosis

In other words, parents in the 60s and 70s created homemade individualised programs for their kids… then it became a payroll for patent junkies… take the power back… there’s enough online training there for any family to make a start for themselves…. what, you won’t do it perfectly, exactly as a highly paid professional? so what! maybe your adaptation will fit your particular child even better!

Working as a consultant with over 1000 families of kids with autism, I’m familiar with watching a vast number of kids in varying programs and which kids tended to get the most out of which types of programs.

TEACCH
I feel Teacch works best for kids who work best in solitude, enjoy and feel rewarded by solitude, like only intermittent social contact and prefer to be left to ‘get on with it’, are methodical, systematic, enjoy a high level of structure.

You can pay mega bucks and take a second mortgage …. or teach yourself TEACCH

OPTION/SONRISE
I feel Option/Sonrise is primarily a bonding program so it best fits kids who main obstacle is that for whatever reason (including severe sensory processing issues) display attachment disorders. Option/Sonrise is about winning a child’s trust but also teaching families how to observe and not invade. Done well, it is a relatively indirectly confrontational approach so may reasonably fit kids with Exposure Anxiety who have compulsive avoidance, diversion, retaliation responses.

You can pay mega bucks and take a second mortgage …. or teach yourself Sonrise/Option

FLOORTIME/RELATIONSHIP DEVELOPMENT INTERVENTION (RDI)
These approaches are relatively indirectly confrontational approach so may reasonably fit kids with Exposure Anxiety who have compulsive avoidance, diversion, retaliation responses and those hypersensitive to the social claustrophobia of more directly confrontational compliance-based programs. Floortime/RDI both focus on using the child’s own interests and co-opting these into constructive activities rather than trying to force compliance of impose directions the child has no interest in. RDI would suit those who enjoy learning through doing and builds inherent reward into meaningful activities rather than relying on constant external rewards.

You can pay mega bucks and take a second mortgage …. or teach yourself Floortime
You can pay mega bucks and take a second mortgage… or… teach yourself RDI

APPLIED BEHAVIOURAL ANALYSIS (ABA)
This is a highly marketed, highly lucrative multi billion dollar INDUSTRY with vast offerings of jobs to new psychology graduates to earn up to $60,000 per family, per year to enter their home and take over as the expert in the home. That being the case expect that if you payroll such a service, exiting the program may not be as easy for you as entering it and you may find yourself having to argue the case for your right to make that choice.

Psychologists are wonderfully useful if you have a mental illness. Young children can be hypersensitive to being socially pursued by directly confrontational adults seeking to justify their own pay packets and if these therapists come from a perspective of viewing autism as ‘pathology’ in need of correction through an intensive compliance based program with external rewards, then this can lead to overdoing the child’s sense of itself as a ‘case’, a therapy case.

The ability to comply for external rewards is a skill that may fit with mainstream school and later employment. But applied intensively (ie up to 20 hrs per week) to a child under 3-4 years old, is in my view a precarious choice that should be weighed up with the child’s personality and equal opportunities to develop an identity broader than being an ABA ‘client’.

ABA may best suit kids who are highly motivated by continuous praise and naturally strive for external rewards. These are the type of personalities which will naturally be motivated by achievement, recognition, and admiration. Temple Grandin never had ABA but had a strict nanny she felt used an ABA style approach and so is an advocate of ABA. Temple may well have had the kind of natural drives that fitted this type of program but many children with autism will not fit this personality profile.

Those driven by a need for routine and acceptance may fall into a ‘pleaser role’ and be at risk of prompt dependency, learned helplessness and dependent personality disorder. Those with a high level of Exposure Anxiety or who are naturally Leisurely, Idiosyncratic, Solitary or highly Vigilant/Autonomous may be at more risk of developing progressive behavioral issues in a highly directly confrontational program like ABA. Subsequent development of acute anxiety disorders in these types of kids are not unheard of in those experiencing intensive ABA where they have experienced this as socially entrapping. The majority of ABA therapists are also female, often in their 20s and have not yet had children (nor autistic children) of their own and putting boys into intensive compliance based programs with these psychologists as their managers may have later implications for their identity development and rejection of skills they’d earlier complied with.

There is no reason why a family can’t set up and operate their own ABA style program if they wish to.
There is nothing highly qualified about intensively fixating on your child in a program with compliance as its basic goal and a system of external rewards in place. Parents can and have set up these programs for themselves in spite of being told by ABA therapists that they are not professional enough to do this ‘properly’ on their own. In fact families sometimes felt they ran the program better, more flexibly and more suited to their particular child.

You can pay mega bucks and take a second mortgage …. or teach yourself ABA.

You can also make a mixed program with an hour of three different approaches with breaks between programs or create one designed more specifically for your particular child.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

DIY Autism therapies… how to stop payrolling the professionals

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Naturally autistic?

PERSONAL EXPERIENCE, PROFESSIONAL EXPERIENCE, AND QUALIFICATIONS

I was two years old in 1965. It was a time when autism was deemed ‘childhood psychosis’. After three days observation at St Elmo’s Private Hospital, I was diagnosed as ‘psychotic’. I was diagnosed with language processing disorder in late childhood around 1972 then later diagnosed with the tidier label of autism in 1990 by Australia’s most eminent autism experts, Dr Lawrie Bartak.

In the same year I built on my existing post graduate degree in sociology and degree in linguistics and did a Dip Ed, becoming a qualified teacher whilst progressively going on to author 9 published books in the field of autism, become an international public speaker since 1994, and an autism consultant since 1996. My text books are used in courses on special education & psychology. I have been hired by health services, human services and education departments to work with people in their care and provide training.

WHAT I DO

My job as a consultant is perhaps closest to being a ‘specialised case manager’ for hire. I assess ‘developmental fruit salads’ and I have worked with over a thousand families. I look at a person’s current communication, interaction, behavior, development. I then look at which low or no cost strategies might help that person lead a fuller life, better reach their potential and establish more harmonious relationships with those in their life.

QUALIFICATIONS AND RESEARCH INTERESTS

My qualifications are in linguistics, sociology (largely social psychology, social anthropology), teaching and I have wide experience in research, counseling, and advocacy. As such, I draw upon a wide range of research interests: gut, immune, metabolic issues, any co-occurring mental health issues, personality/identity/dissociative disorders, sensory perceptual and sensory processing disorders, motor planning issues, environments and their patterning.

THE AUTISM SPECTRUM:

There is ‘Autism’ the noun, the diagnosable condition. There is also ‘autistic‘ the describer, the adjective and any human being will have experienced some kinds of ‘autistic’ phases or moments. Today, Autism is still a singular word given of a range of conditions in a spectrum of ‘developmental disorders’ (some prefer to see them as ‘developmental differences’). However, given the diversity of people on the autism spectrum, these are actually AutismS. Looking closely at each individual, these can broken down into addressable ‘autism fruit salads’.

I have seen stereotypes busted. I have seen profoundly disabled human beings inspired to be more than their condition. I have seen the miracles of what those once written off can teach us. I have also seen the miracles of those without autism who dared to learn so much from those with it.

THE SPECTRUM OF DISSOCIATIVE DISORDERS:

Dissociation is the ability to cut off from what is happening around you or to you. In its simplest form it is daydreaming. It is a skill all children have and which children with autism tend to overdevelop in managing a world they find overwhelming for a whole range of reasons. Dissociation, Derealisation (the feeling nothing is ‘real’ or that everything feels like a dream), and Depersonalisation (cutting off from emotions, detaching, inability to take experiences personally), are experiences most of us have had. Dissociative disorders are where these create problems with functioning and coping in every day life. Some people will have greater tendency toward developing dissociative disorders and if they then experience significant trauma may be more at risk of Post Traumatic Stress Disorder (PTSD). If they are continually entrapped with such experiences from infancy or very early childhood they may be at risk of more severe dissociative disorders such as DDNos or DID.

In 2010 I was diagnosed with the dissociative disorder, DID, a condition I’ve probably had since I was 2 years old and which was enhanced by my dissociative abilities already present as part of my autism. I connected with a number of adults both on and off the autism spectrum who were also diagnosed with DID and eventually used my skills as an autism consultant to begin to research the complexities and diversity of dissociative disorders. I came to do some consulting work associated with DID, primarily working with therapists in helping them as they came to grips with the DID systems of their clients.

ONLINE CONSULTATIONS:

A ‘Big Picture’ Approach

I go past labels and symptoms to the ingredients, the foundations, and what that means for the systems at work, the experiences of the person and their own natural motivations and distresses. Because all people are unique, I don’t do quick one-size-fits-all advice. In a consultation I set to work to focus carefully and professionally on helping each person with their particular issues.

Who can use the service?

Any person wishing to gain more insight into their particular ‘developmental fruit salad‘.
Those with developmental disabilities and their families
Couples where one or both partners are on the spectrum.
Those with or without formal diagnosis on the spectrum who feel affected by related issues.
Those whose primary communication is typing.
Those working with people with developmental disabilities or DID.
Those studying developmental disabilities or DID.

(for professionals I can supply a tax invoice stating services as professional development).

How online consultations work

Payment for email consultations is by credit card via PayPal and cost $50 AUD per hour spent answering.
When you pay for a consultation I receive notification of your payment which includes your email address.
When I receive notification of your payment I will then contact you so we can start.
I never exceed one hour in any one consultation without asking if you want to continue.
I keep track of the time you’ve spent so you can use your hour all in one go or spread it out over time using it as a ‘drop in troubleshooting service’ for future issues you’d like quick tips for.

Email Consultations

You send your information and questions (I do not charge for time spent reading, only answering).
You can also send photos and short video clips.
I try to thoroughly address as much as I can in our hour.
You will usually get your replies within 48 hours.
When I reply I will insert my responses into the text of the email you had sent me. This way you get back your original email but now have my responses inserted throughout to refer back to.
If you want me to delete what you’ve sent, I can do that and simply send my own replies.

In your consultation email you should explain:

The context of who your consultation is about
The nature and history of the issues and what things you want help with
What questions you have or what things you need instructions, feedback or opinion on.

If my replies only take me 15 or 30 mins the rest of the paid hour will remain in credit for a future email consultation. I will only reply within the 60 minutes of my paid reply time and will then insert a line explaining our paid time has run out at that point. When you’ve used up the hour’s time you’ve paid for you are free to book another hour’s time if you need or want to. There is no obligation to do so.

Skype Consultations

Skype is a means of doing online audio-video meet ups or typed chat in ‘real time’. This means we could see and hear each other directly and I can visually demonstrate techniques to you. If you have Skype on a laptop you can even walk the laptop into the room your child is in. You can also bring others into the room to sit in on the Skype consultation as a question-answer forum for other family members or professionals involved.
You can download Skype for free here:

http://www.skype.com/

Skype consultations are done in ‘real time’ so we would have to match up our time zones and make an appointment to meet on Skype. I’m in Melbourne, Australia. You could check time zone match ups using the ‘Meeting Planner’ tool here:

http://www.worldtimeserver.com/meeting-planner.aspx

Try and pick a match up time during reasonable business hours (between 9am- 5pm) here in Melbourne if possible.

When you have found a reasonable meet up time email me at bookings(at)donnawilliams.net
I’ll find us an appointment time to meet up on Skype and swap Skype addresses.
You can then feel free to then book and pay for your hour.

When we meet up on Skype be ready to explain:

The context of who your consultation is about
The nature and history of the issues and what things you want help with
What questions you have or what things you need instructions, feedback or opinion on.

If replies may only take me 15 or 30 mins the rest of the hour you paid for will remain in credit for a future Skype consultation. When the 60 minutes of my paid reply time is up I will let you know. You are then free to arrange a future Skype meet up appointment and pay for another hour’s time if you need or want to. There is no obligation to do so. Skype consultations cost $60 AUD per hour spent answering.

Wondering about the exchange rate from AUD to your own currency?
PayPal will do the conversion for you, but to get an idea of what this could be in your own currency using www.xe.com/ucc/

WORK STYLES

What work styles do I use?

Troubleshooting

You tell me the problem, I advise you/train you in the related strategies.
Mapping out ‘Fruit Salads’

This is for those who want more than a hit and miss ‘one size fits all approach’ but also to help them better work out which programs and services may best fit them or the person in their care. What presents as one condition is often actually made up of a range of separate conditions which combine to give the misleading impression of being ‘one thing’. I help people extensively explore those things and include resources to further research and the management strategies that can be used for each piece of ‘fruit salad’. These extensive ‘reviews’ may explore:

information processing
personality, identity and motivation/distress patterns
mental/emotional/physical health issues
advocacy/inclusion issues
social/occupational/life skills or goals and the maps with which to reach them

An Indirectly Confrontational Approach

I am the author of Exposure Anxiety; The Invisible Cage, a book outlining an Indirectly Confrontational Approach. An Indirectly Confrontational Approach may help reduce:

Compulsive avoidance, diversion and retaliation responses of Exposure Anxiety
Social phobia
Social-emotional complications of severe face blindness
Selective Mutism
Learned helplessness
Social and communication challenges in those with Reactive Attachment Disorder
Oppositional Defiance Disorder and Pathological Demand Avoidance
Turn down the volume on some forms of Personality Disorder (Schizoid, Schizotypal, Dependent, Avoidant, Passive-Aggressive personality disorders)

Gestural Signing training

Gestural signing is generally called ‘home sign’ and one part of deaf signing. It is a way of using movement to track the meaning of both written and spoken speech (one’s own and that of others). It is not Makaton, not ‘waving your hands about’. Gestural signing may be most useful for those with:

‘Meaning deafness‘ (Verbal Agnosias/Semantic-Pragmatic Disorder)
‘Meaning blindness‘ (Visual agnosias)
Difficulty gaining or holding meaning when reading (Visual Verbal Agnosia)
Severe difficulty with the brain-speech relationship (Oral Dyspraxia/Speech Apraxia or Speech Aphasia )
Severe difficulty daring to speak (Selective Mutism)

Kinesthetic Learning

Kinesthetic learning is about using touch, texture, acoustics (sounds), to explore the progression and connections between the parts of objects or their wider context. Kinesthetic learning is hands on learning for those who can’t think then do and much learn through doing. It is especially important for meaning deaf/meaning blind children who struggle to learn just from visuals or watching. This can help those with:

Object blindness (who see the part, lose the whole)
Context blindness (inability to use context to understand objects or actions or meaning of objects)
Severe face blindness to recognise and connect with others

External Mentalising

Some people struggle to follow instructions, make mental comparisons, conclusions or choices. This can be because they struggle to keep track of or consciously juggle complex thoughts. External mentalising involves using representational objects and ‘mapping’ to keep track of multiple concepts, to build up insight and self awareness, to understand cause and effect/consequences. Gestural signing is also one of the tools used for external mentalising. External mentalising may help people to:

Measure and assess which feelings and relative strengths of feelings someone may be having
Track a simultaneous sense of self and other they might otherwise never process
Keep track of the meaning and sequencing of their own speech

Discovery Learning

Discovery learning is the opportunity to directly explore the wider community, public transport, encounter others, exchange money, handle objects and generally get access to real life experiences. Discovery learning allows a person to kinesthetically (hand over hand) explore a world they may not have the communication to ask about or the experience to yet visually understand.

It is also process in which tantrums and meltdowns are managed in a neutral way, without judgement and the person is navigated through self calming processes in learning emotional self regulation. The guide negotiates and advocates directly with those in the community in the discovery learning process. Family members are encouraged to be present and take an active part in training to take over as the guide. Discovery learning may:

Turn around learned helpless
Build confidence
Directly educate the community about it’s own role in the lives of those with disabilities

Counseling

I counsel older children, teens and adults including:

Any person wishing to gain more insight into their particular ‘developmental fruit salad’.
Those with developmental disabilities (including autism, Asperger’s, PDD Nos etc) and their families.
Couples where one or both partners are on the spectrum.
Those with or without formal diagnosis on the spectrum who feel affected by related issues.
Those whose primary communication is typing.
Those working with people with developmental disabilities or DID.
Those studying developmental disabilities or DID.

Case Management

I help families work out which interventions are most relevant and useful at a given time based on the family’s unique structure. Where possible I may also suggest, demonstrate or train the family in alternative approaches which are ultimately low or no cost. This is because:

No interventions work for all people with a shared label.
Some interventions bring out the worst in a personality yet this may be blamed on ‘the autism’.
Some interventions do not train or empower the carers or the person with the disability.
Some health interventions are assigned to those with disabilities who do not have health issues.
Some products are targeted at those with sensory perceptual or cognitive differences these products don’t fit.
Financial burden can be put on families to adhere to approaches and products which may not be required long term, may have outgrown their usefulness, simply don’t best suit their child or greatly disturb the sense of home or family life

How do you book an online consultation?

You go to this page:

http://www.donnawilliams.net/emailconsult.0.html

then pay for a consultation and I’ll get the notification of that payment and we take it from there.

What did other people think of my consultation service?

here’s some testimonials:

I have been privileged to work with Donna for the past 6 years as she carried out regular consultancy work at the unit I managed in Staffordshire, UK for children with autism. She was a brilliant influence on staff, parents and pupils alike. Donna has a great gift for very quickly identifying pupil’s difficulties and needs then offering practical advice to help. She is always organised and professional in her work and reports and information arrived when she said they would and were extremely detailed and valuable. I have no hesitation in recommending her services.
J.A. Birchall, B.Ed, MA (Teacher in charge of Autism Outreach Team)

In less than two hours of consultation with Donna, problems we had been suffering for years had answers. Within two weeks my 5 year old daughter no longer needs to be locked in her room at night. She is feeding herself and she has given up baby bottles. She goes to the toilet. How fortunate we are to have the privilege of gaining Donna’s direct insight. How long would we have stumbled around in the dark? Weeks? Months? Years? Forever? Donna has given us a gift of understanding and hope. She is a “Living Legend”.
Lis Eynon, Tauranga, New Zealand.

It has been a privilege to know Donna Williams who has authored 9 books on Autism, some of which are international best sellers. Her knowledge of Autism is first hand and comes from personally experiencing it. It is not learnt by studying the subject or merely by observing those with Autism. With her long history of contact and dealings with many many Autistics, her expertise on Autism should be respected. Having read over 150 book on Autism, I personally listen to Donna Williams when she speaks and actually take note of what she says.

On a professional, as well as a personal level Donna is inspirational and her expert advice is invaluable and is virtually impossible to obtain such high quality and practical advice about Autism anywhere in Australia. I can say this confidently, as I had been seeking, to no avail, such advice for a long time until, by chance I came across this amazing “Artie Autie“.
Dr Tony Marshal, MB, BS, MHP(NSW), FRACGP
Family Physician, Frankston, Victoria, Australia

Donna has a very impressive ability to recognise and focus in on the particular difficulties being experienced by individuals across the spectrum of autism conditions. Having identified the issues, she explains them to the individual and his/her carer in a way appropriate to each person’s level of comprehension and way of communicating, recommending strategies to overcome the presenting issues. Her written reports are thorough, very helpful and arrive when she says they will. She has very high ethical standards and is a professional I would have no hesitation in recommending to those needing an expert in autism.
Kathryn Erangey, Autism Oxford

I remember when my son was first diagnosed at around two and a half and I was told he needed speech therapy, playgroup and early intervention and was given a booklet on all the resources available to me to help and sent on my way. Well it was a maze to say the least. I got on the net and found so much information, I didn’t know where to begin and what was relevant. Over the next four years, I undertook a lot of research, but nothing gave me what one day with Donna Williams did. She is not a social worker, not a psychologist, not a dietician, GP, naturopath, homeopath, neurologist, immunologist, etc, etc, etc.

Donna provided me with a perspective, understanding and the most valuable information on issues associated with Autism, that you would get from all of the people I just mentioned in one place. Moreover, she provided a perspective from more than one side of autism. Thorough, clear, precise, and dedicated, I felt that she was reading my mind and answering questions before I even asked them. Her assessments were mind-blowing and accurate and her report was clear, easy to follow and full of ideas and strategies to work with the issues that exist in my family. A warm, interesting, beautiful soul, Donna Williams was a catalyst to a new phase in my family’s life and a step forward in understanding the world of autism and related issues. Thank you so much Donna.
Anastasia Maragakis, Australia

As a mentor and a good friend Donna has given me the determination to carry on. Her lectures, website and emails give me the extra knowledge to sort out my ‘fruit salad’ making the world a less intimidating place to live in. More people should listen to Donna who helps to remove the barriers to learning and help make bridges between us.
Zoe, UK

For the better part of three years now, Donna Williams has counselled and aided me through anxiety and self-destructive behaviours, including self-harm and social isolation. She reached me through a range of ways, beginning as a brief couple of words from outside my bedroom door (where I had mostly been for a year and a half) as I didn’t want to meet anyone. That progressed on to art therapy, and it wasn’t long before Donna taught me how to become social in a safe and supportive environment.

Donna Williams was able to connect with me through her books, art, music and face-to-face counseling, even though I am not diagnosed on the Autistic Spectrum. She was able to do what none of my other counselors; psychiatrist and psychologists were able to do; give me a sense of self. I’m now back at school and on my way towards working in the field of Social Work.
K.Toni, 18, Australia

Consulting with Donna made an enormous difference in both my daughter’s life and my own. I was so frustrated after trying the recommended therapies and programs of the day which promised to help children with autism regain their ability to cope, learn and communicate only to find my daughter slipping further and further away. Donna taught me to be patient and respectful, to allow my daughter the space to approach me when she was ready for input rather then force-feeding her drills and stimulation from morning to night. She taught me about my daughter’s Exposure Anxiety; about her need for time alone and gentle, indirect approaches rather than the demanding and highly stimulating methods we’d been using. My daughter responded immediately and joyfully to the approach I learned from Donna and for this I will be forever grateful!
Lisa Edmond, Temecula, California, U.S.A.

Deal provides services for children and adults with little or no functional speech, and we regularly refer clients with difficult behaviors to Donna. She consults with the families of people with ASD, providing valuable insights into many behavioral issues, and generates detailed and professional reports. Our clients have been very appreciative of her services.
Rosemary Crossley, A.M., M.Ed., Ph.D.

Donna’s willingness and ability to help us with our son, Gordy, has been a Godsend. Her insight into how he experiences the world has provided a window for us to better understand and support him. Donna has answered questions for us that no one else ever dared. A time when we thought we had heard it all, read it all, known it all, Donna lead us to invaluable new resources, remedies and strategies to address our son’s medical, emotional, psychological, sensory and behavioral issues. Although we live on opposite sides of the world from each other, Donna’s compassion has been an invaluable source of support. Knowing that ‘an answer’ from Donna would be there on our computer in the morning, has gotten us through many a dark night. Her vigilance and optimism are an inspiration. And for all her experience and incomparable expertise in the field, her rate for email consultation is the best bargain on the entire planet.
Gordy’s Grateful Mom

The minute we saw you, you changed our lives for ever for our son George. We have taken your advice to the tee. As a result this boy has changed immensely. He now knows his alphabet, his numbers up to 20 all his body parts, also spells 7 words, his toilet training is excellent now, his speech is excellent in sentences and he is voicing what he wants. We are on the journey, and what a challenging journey it is! We do get bad days but nothing like before. Thanks again.
Mary Alam, Australia

I have struggled to exist since I was little, since I can remember. I’m now 38 and I’ve had several therapists, some National Health Service people, some private and I had all but given up hope that someone would reach who I really am and how I function. My depression and my OCD were diagnosed no problem, but this became a diagnostic blanket which covered my real problems. Whilst browsing the web I found Donnas site and followed up several other sites on autism, a rather large old rusty penny crashed into place. I wrote to Donna for a consultation with massive fears about confidentiality but Donna was professional, friendly and knew her grounds inside and out.

Donna is patient, warm, funny, and intelligent. Her insight and understanding have given me the ability to fight back and finally understand who, why and what I am, how I function or dysfunction in a world of people that feel alien to me. Her advice, explanations and kindness have been well wrapped in total professionalism. In my own opinion, Donna remains the world authority in understanding and helping all those across the autistic spectrum. I only wish I had met her years ago.

Donna is an inspiration and the way forward for autistic/asperger/autistic spectrum/high functioning adults and children alike and I wish her every success with all those out there who desperately need an explanation, diagnostic teacher and friend.
…DR

The help that I and my 14 year old eccentric, autistic son have received from Donna via her email consultancy has been of outstanding value. She stood by me and guided me through crisis like when my son started and consequently stopped self harming. She has always inspired me and come up with answers I would have never known or thought about but which worked – be it about health issues, problems at school, problems at home , or about my own personal struggles with life. She has challenged me when my attitude stood in the way of our progress. Knowing that she is there behind the screen has been such a support. I find her approach unique, dedicated, caring and uplifting. I feel privileged to have received Donna’s services. My son’s life and my own life are infinitely better for it.
Malai Sontheimer, single parent, counselor and acupuncturist, Bristol England

Our son Archie is 7, non-verbal, and severely autistic. He’s funny, affectionate and loves to tease us. He also has many obsessive compulsive behaviours. In our initial consultation with Donna I asked how to deal with these compulsions and obsessions. At that time our calendar had been stuck on January for 7 months (attempts to take it down or turn over the page were met with meltdowns), and I was not allowed to open any windows in the house (again opening a window resulted in a meltdown). Within a couple of days of our first consultation the calendar had been taken off the wall, and 3 windows in the house were open, all achieved with little complaint from Archie.

We’re now working with Donna to better understand how Archie perceives the world and how we might use this knowledge to increase his ability to communicate. Donna has such an insight into Archie’s world and is able to pass this onto us, thus providing us with the tools and confidence we need to help him. Her emails are considered, thoughtful, extremely informative and an absolute bargain. My only regret is that we didn’t start sooner.
Archie’s Mum, UK.

Donna demonstrated an almost clairvoyant ability to get under the skin and inside the mind of my daughter. But anyone who has read Donna’s books will know that this uncanny ability is founded on long hard personal struggle and extensive research in which she pursues all avenues without prejudice. This is, quite possibly, an unrivaled combination within the world of autism and in her consultations Donna shares the fruits of this with great generosity of spirit. I can only recommend to other parents (and professionals) to take advantage of this very reasonably priced service. Over the years my daughter has seen any number of professionals, but even when helpful, none have shown this depth of compassionate understanding of the autistic mind.

Not every parent will have the energy or resources to pursue all the options that Donna offers, so be prepared to select what feels right and possible at the time.
David Clark

I was invited to one of Donna’s workshops by a mother who also has an autistic daughter. Donna quoted “Regarding the present view of Autism, we are the idiots of tomorrow.” Listening to her seminar changed everything. I instantly arranged a private consultation. Donna was the first person who actually told me why Lena behaved the way she did. Donna taught me how an holistic approach could help my daughter and how just by changing my teaching methods Lena could have great improvement. I began to see incredible changes in Lena, and for the first time since Lena had been diagnosed I felt hope. Under Donna’s guidance I have been able to help my child communicate with me. I am my daughter’s guide in her life. Lena has really been my teacher. And if it wasn’t for Donna I may have not seen or understood it.
Maria Kromidellis

Donna Williams, BA Hons, Dip Ed.
Author, Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Affordable online help for people with autism & associated conditions

Warmly,

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Donna Williams’ December 2011 Christmas Art Sale

When my husband Chris got home, I showed it to him, obvious de’ja vu from late June when he’d been out of hospital 2 weeks and I had him feel the large lump in my left breast that within a week was diagnosed as breast cancer (3cm tumor that developed over 2-3mths). So he said he’d seen this black spot a week ago, thought perhaps I’d hit my head, had a blood spot there. He looked closer and determined it was time to see the GP tomorrow.

One of the GPs at our local clinic specialises in skin cancers and has all the equipment to view them properly. I saw him and explained I’d just finished chemo for breast cancer, had a history of variable immune deficiency (white cells, IgA, IgG2) and that members of my mother’s side of the family were in a medical study for Melanoma. He viewed it with the dermatoscope. It was irregular and black with a bluish tinge to it. He wrote a referral to a dermatologist and marked it urgent. I contacted one of the dermatologists on the list, one who’d seen me a year ago. His secretary put me in the priority queue then called to tell me I had an appointment on the Monday.

I had a million questions, of course. How could my chemo have killed stray breast cancer cells but let new melanoma cells develop? What did the speed of this new melanoma developing mean for the state of my immune system and its ability to limit the development of new cancers? Did I have any equipment at all to hold back new cancers? What happens when I get one I can’t see, even internal ones (you can develop internal melanomas). It’s one thing to potter through one’s life and get a melanoma and say, oh well, I’m an Aussie, it happens. It’s another thing to be in my 40s, 7 days out of chemo and find a fast growing melanoma appear out of nowhere as if its mocking chemo, mocking your new status as cancer survivor, your feeling you had beaten cancer and felt declared cancer free.

I named this new beast Mel Anoma. Like Ignatious Pug (my 3cm breast tumor) we will evict Mel ASAP. I refuse to let cancer boss me around. But I did want some answers… like did the chemo work? Am I missing something? Like Caspase2 (tumor suppressor protein that is responsible for regulated cell death of damaged cells, including cancer cells)…. without enough of it was the chemo less effective?

I heard from my oncologist. He reassured me that the melanoma in no way indicated the chemo failed to kill any breast cancer cells. He told me that my chemo drug, Taxotere, is not known to be highly effective against melanoma in the way it is against breast cancer and some other cancer cells.

One theory I have is that chemo caused immune suppression and as skin cancers are more common in people with immune suppression, this melanoma just took an opportunity provided by the chemo. I looked up the statistics for melanoma. Not nice! Now to just get that melanoma gone and recover from chemo to get my immune system into as good shape as possible.

UPDATE: results back today from the pathology lab… it was not a melanoma… it was a blue nevus (a blue mole)… apparently it had mutated from a normal mole, hence being largely black blue but also with red and why it looked like a melanoma. probably arrived as a result of drug related damage to the skin…. but its gone and all’s fab with the world

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Post chemo Melanoma

nor strive to like someone
nor even love them

WHEN you like yourself
WHEN you have come to love that self
it is like sunshine
it warms those who come into contact with it.

it resonates with those who like themselves
and that’s how you’ll attract healthy people

people who won’t need you
who won’t want you because of their own emptiness
who won’t enjoy the freebie of being loved by someone just because they need it
who won’t need to be liked because they already like themselves

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

This item originally posted here:

Boundaries and how to stop being a compulsive pleaser

Maybe we see our own Pollyanna addiction to hope, our fear of fear, fear of despair, fear of depression or fear of helplessness. Maybe our own castration from the right or ability to judge or feel anger, sweeps us right up into our Pollyannaism. Maybe our pasts as the children of users and abusers honed these scars for us to the point of perfection, these marvelous scars of smiling never ending hope, optimism and Emperor’s New Clothes type ability to see what would be so much easier to see, or at least wouldn’t rock the boat. And don’t we all love a bumbling fool, an innocent child dancing under moonbeams and there’s the wolves of course not smiling, they’re baring their teeth thinking ‘dinner’,

So I had had a most wonderful day, a happy-non-birthday with fab people and I said to my hubby, we have always had lovely parties, only once did we really have an arsehole put a damper on one…. but then I clarified, no, he was not an arsehole, he was… well he probably had untreated Schizoaffective disorder, and addictions, and was a Sociopath and… well none of that was his fault…. and then I caught myself in my Pollyannaism and said… that’s how it happens, isn’t it… its the “But aside from all that….” syndrome. And I said, thing is that we could all do this with every seriously damaged using, leaky bucket, stalking, cling on, flag waving martyr, emotional vampire, bad boundaried, insatiable me-me-me, cause-addicted, self pitying, users and its true that they will have MOMENTS when ‘aside from all that…..’ But it IS just moments… And we Pollyannas don’t dedicate moments to these types, nope, we don’t give them a small piece of the big cake, we give them the whole damned cake, after all, Pollyanna lives on air half the time, or at least in the Glad Game she could convince herself that an air cake would do her if she’d given her own cake away.

So why don’t the Pollyannas just give away MOMENTS? Why do they throw years down the toilet on people who they should have only waved to at a bus stop and then caught another bus? Well Pollyanna is the first to become engaged. Want to know the time, ask Pollyanna. Want to be shown which way into town, Pollyanna will show you. Oh dear, you found yourself suddenly kicked out, well of course Pollyanna will give you a sofa in the living room. And will she ask herself why YOU didn’t improvise to solve your own problems, head them off, or do the adjustment work so you weren’t a walking need machine? Nope, for Pollyanna is a master of beingness and as such lives in the moment and doesn’t do the math.

So if she does learn to give away moments, would those be wonderful? Can a psychopath ice a cake? Well they tend to do well with icing and embellishment so, sure. And would Pollyanna imagine the cake might give her food poisoning? Nope, she lives in a world where a cake so nicely iced must be good under all that.

So it has taken me years to let the cynic rise up and have her voice and she and Pollyanna were so at odds. Progressively they understand each other and we are so much safer for it.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

But aside from all that….

AUTistic as an ADJECTIVE meaning (SELF oriented/contained) … brain fog and immune related brain issues can make one AUTistic…. social emotional agnosias or significant visual/verbal/body agnosias can make one AUTistic…. communication disorders can…. dissociative disorders can…. OCPD (Obsessive Compulsive Personality Disorder) is essentially an AUTistic personality disorder…. being Schizoid/Schizotypal are AUTistic personality disorders, having AvPD (Avoidant Personality Disorder) is essentially AUTistic, having DPD (Dependent Personality Disorder) is AUTistic and narcissistic, and NPD (Narcissistic personality disorder) and BPD (Borderline personality disorder), Passive Aggressive Personality Disorder, are essentially ME oriented personality disorders, drug/alcohol/computer/gambling addiction is AUTistic,… being hypervigilant to the point of social paranoid, or being too highly sensing or too real or too deep in a world of bullshit and ego can make one more AUTistic, being developmentally delayed or disabled in a world that co-opts that, pursues it, flagwaves it, uses it as currency, excludes or cashes in on that can make that person self contain, feel more AUTistic, so no wonder so much confusion/identification/debate about what IS versus what is EXPERIENCED as “AUTism”.

Having met personality disordered adults who with autism who were diagnosed in early childhood and having met personality disordered and dysfunctional adults who had no such childhood diagnosis, I know that without giving these people the ability to discuss their stuff they can too easily use the ‘autism’ idea to excuse it instead of address it.

So as we rip and shred and hate and harm and hurt and haul this person or that person over the coals of debate and diagnosis, maybe we should sociologically acknowledge the adjective of AUTistic so this vast range of people can discuss their alienation, derealisation, disorientation, and disabilities whilst acknowledging where and if and how they do or did fit a DSM for the medical condition of autism.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

AUTism… the adjective