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.

So clearly there was developmental delay. I remained echolalic until late childhood.

But this 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.

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, Hyperesthesia, muscle weakness and ‘mental backwardness’.

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.

With the 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 days of 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 probably be far more at risk of being overwhelmed by. 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. And there’s still familial Rickets and vitamin D related metabolic disorders which most people are unaware of.

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

WHEN: 7pm, 4th Thursday of the month
WHERE: Honey Thai Restaurant, 1678 Main Rd, Belgrave (just up from Belgrave railway station footbridge)
WHAT: Dinner (meals start from around $17 and special diets can be catered for) with others on the spectrum
WHO: teens and adults on the autism spectrum and their direct support people.
This group has been successfully running since 2006.
Note: we have established 2 important ground rules for attendees
1) this is NOT an opportunity to study people with autism or explore ways to enter the autism field
2) those attending are expected to be self management skills (ie: able to respect other people’s space, have reasonable hygiene, respect the venue etc).
Any doubts whether this group is for you, please contact Donna: bookings@donnawilliams.net

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:

Social opportunities for people with autism in Melbourne

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

Those who exercise throughout chemo tend to do better and I suffer from Dysautonomia which is aggravated by the chemo. This interferes with my brain’s ability to regulate things like heart and breathing, messes with circulation, interferes with bladder and bowel function, causes brain fog, reduces brain function during acute episodes and is generally pretty awful. Exercise is one of the most important parts of working with Dysautonomia. I also live with immune deficiencies and of course exercise is really important in keeping what immune function one has.

Our post office is a 10 min walk there and back. Those buying a pack of my art cards throughout September to November will be encouraging me to do this walk and I’ll pop in 5 extra cards including a signed one from me. You can purchase 10 of one design OR specify in the comment box that you’d like me to send 10 varied cards and mention some you like. Here’s the link for those interested.

Warmly,
Donna *)

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

BIG THANK YOU TO:

Nikki Yokoyama
Anita O’Flynn
Marisol Villamil
Suzanne Ayres

for so far supporting this program.

This item originally posted here:

Buy art cards and get me walking!

They call it chemo but its actually the ticket to Mars!
People there may say the ‘C’ word but I know that is a code name because otherwise everyone might want to go to Mars, so they have to make it look like crap so only the hand picked people get on the rocket ship.
And they say they use chemo, which is is code for Kimba… so they know they are actually dealing with Kimba and we all know that’s one really resilient white lion.

The rocket ship to Mars is well tested… the doctors are all scientists who have tested it for lots of years and found what brings almost everyone back alive.

I have great pilots, co-pilots, autopilots, all monitoring everything from the ground
I have a cheer squad tuning in from 12-1pm daily to monitor lunch progress and ensure all limbs are moving
I have astronaut food disguised in baby food jars as it may be difficult to digest on Mars and mouth ulcers, sore through and dodgy gut are quite normal for the inhabitants there

plus since I gained 3-4kg and got a normal white cell count at the ticket counter, well my seat got upgraded from the back of the rocket ship to the third row

and those getting to go to Mars are very lucky, they are all hand picked because if they stayed on Earth they might die soon due to an early useby date, but once they get back from a few months on Mars, they are CHANGED, their program gets changed and then usually they will live on on Earth without their otherwise pre-programmed in complications and they get an extended useby date!

This is how it works on Mars.

So I’m glad I’m going.

Warmly,

Polly (from team Donna)
one of the new converts.

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:

Mars, Mork, Kimba and Chemo

Among my 13 alters they were all coming to terms with my cancer after the diagnosis.

Willie, the pragmatic, logical, doctor, psychologist, researcher and all round walking encyclopedia of our DID system, had devoured all the language via Pubmed and Wikipedia so she understood all the key words and felt prepared for the procedures ahead.

Da, our comedian, Houdini and unstoppable entrepreneur (she sees Richard Branson as a role model) had made jokes about jumping into the microwave to do our own radiation and was casual enough about the appointment to have cooked bread whilst waiting for our lift, bread due out of the oven 5 minutes after we were meant to leave. Having identified as a gay male, she had no problem with ideas of mastectomy. ‘Wop the bloody things off and be done with it’, had become her mantra.

Then our system’s girly girl, Carol would suddenly break through in tears that people could be cutting her breasts off. She was afraid of being ugly but I’ve reassured her that if you are beautiful inside you don’t need breasts, that people need to look at the breasts of those who haven’t developed a shiny soul because there’s nothing else to look at and she’s shiny and would be as wonderful without breasts as she would be with them.

Marnie, our rather punk anarchist, had already picked our our possible mastectomy tattoo and was empowered by having the job of bluntly getting rid of those saying ridiculous twaddle or being an energy drain.

Addie, the system’s quiet, gentle social worker and nurse, has started making craft bears to sew in the waiting room.

Anne, our graceful, gentle artist, has gone quite dormant, only coming out to play piano occasionally. Esby and Ning (who used to be a cat) appeared to snuggle for a while. Opie (our bear) has been dormant.

Rose appeared, mourning the future loss of body parts (and energy) in this upcoming journey and seized the opportunity for sex whilst she could.

Katrina reminded us that life is about the soul, the people we move and alter along the way, the investments we make in the souls of others that mean we live on in them just as they live within us so we are never alone with or without the body, in life, in death or the journey between the two.

Polly was coming to terms with cancer as a 5 year old might, talking openly about having to burn the body if the cancer eats it all because it will be rubbish then and we’ll have to get a new body and what she’d like to wear when the body is going into the burner (cremation). So for her it was going to be ok because we could get a new body anyway. She had other ideas too, that Willie would handle the pain and operations so she’d be ok, and that she would become Harriet Bottomly so nothing could happen to HER (that’s DID for you, and we’ll watch out we don’t end up with a new alter called Harriet!).

Then Foosh (who used to be our rabbit) has done us so much good doing what Foosh does and loves best… sleeping.

Da had done the car ride to the hospital, joking about but once we were inside, Polly was there and silently put her head onto Denise’s shoulder. Called in by the nurse, I was there and sought to keep up with her instructions and explanations of the procedure. These were all tumbling in my meaning deaf brain (I’m only 30% meaning deaf but this increases depending on how many threads of information are given). So I was mouthing her words and putting gestural signing to them to understand it all kinesthetically. In the meantime I had that ‘deer in the headlights’ look which happens with meaning deafness. ‘I can see you’re scared’, said the nurse. ‘No’, I replied, losing the deer in the headlights look, ‘I’m just trying to track what you’re saying’.

Next thing I was in a cubicle wearing a gown tied up at the front, next laying on a bed in another cubicle staring at a Monet print of water lilies, next I was asleep. The nurse arrived, my team was ready. Next thing I was in the ultrasound room for my guided biopsies. I looked at the nurse, unsure for a moment if she’d switched with someone else but her voice told me she was the same person (I’m faceblind).

I noticed my (tinted) glasses were off as the room was in bits (I have Simultagnosia). I asked if they’d taken them off me, but no, one of me had taken them off myself. They offered them back to me and the room glued back together. They said that when they start the procedure the lights would go down. ‘How?’, I asked, thinking the machine would drain the electricity of the lights causing them to go down. ‘Oh, we turn them off’ said the sonographer.

Next the operating table was raised, the lights were turned off. Inside, Polly asked if we were going to the movies. ‘Yes’, I told her. Da spoke, ‘this is going to be a scary movie and a good movie all in one, isn’t it?’. ‘Yes’, said the nurse, ‘guess it is like being at the movies’.

The sonographer scanned my armpit, looking again to be sure I had no cancer there. They couldn’t find any there.

A man arrived, dressed in blue. He started to instruct the sonographer and nurse, had instruments in his hands, was drawing on my breasts as the sonographer located the cancer on the screen. ‘Is he a doctor?’, I asked. ‘Yes’, said the nurse. ‘What’s your name?’, Willie asked him, after all, he was anesthetizing my breast and about to make incisions into it. He told us and someone repeated his name out loud. ‘I’m faceblind’, I explained, if I don’t get your name I’ll keep thinking I have all these different doctors.

The sonographer had the cancer on the screen. ‘What’s that?’ I asked pointing at the waves under the cancer. ‘That’s your muscle’, she said. Then she pointed out the bone, ‘and that’s your breast bone’. The bone looked around 1 cm from the cancer. I felt relieved.

The biospy hurt and suddenly I experienced a flashback of falling over in the school playground at age 6. I had grazed my knee with gravel under the skin. It was bleeding. ‘We’ve hurt ourself’, said Polly inside, we hurt our knee, it has gravel’. ‘Yes’, I assured her inside, ‘and we will fall over one more time, but its just a sore knee and we’ll clean up the gravel’.

Polly noticed the ceiling was so close to us so we must be in a very short room with very short people. Da asked ‘are we in a short room or did you put the table up higher?’. ‘Yes’, said the doctor, we raised the table. ‘Oh’, said Da, I thought I was in a room of very short people.

The doctor asked the nurse for a ‘short black’. I was perplexed. ‘Does he need a coffee?’, I asked the nurse. The medical team chuckled. No, a short black is a type of biopsy instrument, not a coffee.

Then they took the second biopsy. Again, we had a flashback of falling over, grazing our knee, the dismay at having gravel under our skin. ‘Yes’, I said gently inside to Polly, ‘we had to fall over twice, now we can fix up the grazed knee’.

We had to turn around to the other side of the operating table but couldn’t work out how. Instead we just froze unable to co-ordinate the verbal instruction with the body. ‘I can’t work it out’, I said, ‘can you help?’. They helped get my body started and somehow my brain caught on and followed through with the movement they’d started. They aspirated the cyst in the right breast. Well at least we now knew that only one breast had cancer.

The doctor showed us the biopsy in a jar, two 3cm fleshy threads taken out of my left breast.

Finally, we were dressed and wandering our way back to the waiting room. But we were lost in the corridors. ‘Help, please’, I said, disoriented, to a doctor at a desk in a small open doored office, ‘I’m lost’. The doctor got up and pointed to an exit sign. I headed there but she caught me up and navigated me the way back to the waiting room. Denise (and her own alters) were waiting. ‘Got your pictures’, she said, holding up my scans. And we left, with the results of type, staging, grading and treatment going to be next week.

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, DID and Cancer – Biopsy Day