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What Is It Like to Be on the Autism Spectrum?

 

“Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights. There seems to be no clear boundaries, order or meaning to anything. A large part of my life is spent just trying to work out the pattern behind everything. Set routines, times, particular routes and rituals all help to get order into an unbearably chaotic life. Even when I want sometimes to take part in something, my brain just will not tell me how I should go about it and contrary to what people may think, it is possible for an autistic person to feel lonely and to love somebody.” Quote from an autistic person.

 

 

Ironing Out the Wrinkles

 

Life was once a tangled mess.

Like missing pieces, in a game of chess.

Like only half a pattern for a dress.

Like saying no, but meaning yes.

Like wanting more, and getting less.

But I’m slowly straightening it out.

 

Life was once a tangled line.

Like saying yours, and meaning mine.

Like feeling sick, but saying fine.

Like ordering milk, and getting wine.

Like seeing a tree, and saying vine.

But I’m slowly straightening it out.

 

Life is now a lot more clear.

The tangles are unravelling,

And hope is near.

Sure there are bumps ahead.

But no more do I look on with dread.

After fourteen years the tangles have straightened.

(Vanessa Regal-Autistic person)

 

 

 

 

 

 

The following information is targeted at parents & carers of children who come under the umbrella term of Autism Spectrum Disorders but the therapies and supplements suggested can be implemented into any ASD person’s life with positive results.

 

 

WELCOME TO HOLLAND

 

 

This story is a sensitive and imaginative way to try to help people understand the special experience of having a child with a disability. (The story was on the Internet and has been made available to be shared by everyone).

Although the disability the mother was writing about is Down syndrome, this story relates to any special need.

 

“When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo, David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

 

Several hours (or days or weeks or months) later you land. The stewardess says welcome to Holland. Holland? What do you mean Holland? I signed up for Italy! I’m supposed to be going to Italy. There’s been a change in the flight plan, you’ve landed in Holland and here you must stay.

 

The important thing to remember is they haven’t taken you to a horrible, disgusting place. It’s just a different place. You get out new guidebooks and you learn a whole new language. You will meet a whole new group of people you would never have met. It’s a different place. It’s a different pace than Italy.

 

After you’ve been there for a while, you catch your breath, you look around and you begin to notice Holland has windmills. Holland has tulips. Holland even has Rembrandts.

 

But everyone you know is busy coming and going to and from Italy and they’re all bragging about the wonderful time they had there. And for the rest of your life, you will say, “Yes that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, go away, because the loss of that dream is very significant. But if you spend the rest of your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.

 

By Emily Perl Kingsley

 

 

A Person WITH SPECIAL NEEDS is a human being like any other.

                                                                     

THE HUMAN SPECTRUM RANGE OF TALENTS AND ABILITIES

     Intellectual Disability

“Normal”

Artists, Musicians,

Scientists

“Eccentric”

& ADHD,

ADD

ASD

Classic Autism

 

Try not to think of your partner, child, relative or charge as having a ‘disorder’, but just a different way of thinking, sometimes it would be advisable that instead of trying to connect the person with ‘our world’ or ‘normality’ and ‘bring them back’ or ‘wake them up’ maybe we should attempt to become more like them. See them as talented focused individuals who do not require social and language skills to achieve what they want in their life and who still enjoy life in their own way, not necessarily in the way we would like or expect them to.

 

All the neurological conditions, like ADHD, ODD, ASD and Autism that individuals are being diagnosed with more and more, simply affect the way that the person communicates and relates to others.

 

Your Highest priority is to improve their ability to communicate in everyday situations not teach language. Just because they may not be verbal doesn’t mean they don’t understand.

 

We/they need to feed their minds with positive, acceptable social behaviours and not just say what is acceptable. These individuals appear to have NO conscience; they do not appear to differentiate between fact and reality. There is an absence of awareness of self and reality in the world, so they become the characters on T.V, Computer Games and Movies. This is what is known as PURE CHARACTERIZATION, Higher functioning ASD persons can learn dialogue from TV advertisements and often recite this as part of their communication to others.

 

There is plenty of focus given to diagnosis and to which therapies are most effective. Diagnostic tests can be extremely costly and treatment is an ongoing cost and a drain on personal finances and community resources. The tests are beneficial for research purposes and to ‘individualize’ a program, but the focus should be on improving their health and wellbeing regardless of their diagnosis or presenting symptoms.

 

SURVIVAL TIPS FOR CAREGIVERS…

 

Everyone in this modern world is BUSY. We have to be realistic with our expectations as carers and not take on guilt if we can’t ‘afford’ what seems to be the best treatment for them or spend as much time with them as we would like, or even recognize that we need time out as well.

 

However, we can spare a little time to have some FUN together; don’t forget to laugh (even if it is just at yourselves at times!) 

 

Everyone knows that caring for and living with a special needs person is an emotional roller coaster, with tears of frustration one minute at their behaviour and tears of happiness and pride that next when we ‘connect’ with them or make a breakthrough. We need to try to focus on the fun side that is found in every individual.

 

Always reassure and keep reassuring that you love them even if you do not love their behaviour.

 

Routines and boundaries help ASD people feel safe and secure; this doesn’t mean restriction of their creativity or self-expression.

 

Tantrums/Yelling sessions are simply a form of communication. Tantrums communicate frustration or misunderstanding. An ASD person may simply be communicating that they need time out for themselves, but don’t recognise this to verbalise this to others, so they ‘act out’ & ‘throw tantrums’ in order to be removed from the stress or frustration.

 

ASD persons won’t always hear what you say, but they will hear your ‘tone’ of voice or even ‘feel’ your emotional state, they need your love, not your anger.

 

ASD people require limits and clear consequences as a result of their actions even if it appears they will never comprehend or understand what you are trying to say.

 

  

3 AUTOBIOGRAPHIES, WHICH GIVE AN OUTSIDER A GLIMPSE INTO THE WORLD OF AUTISM…

 

Ms Donna Williams.

I was born in 1963; my parents were told that I was possessed or stupid. I had a ‘sense of being ness’ of becoming the feel of energy, an instrument of resonance. I was a world that didn’t feel the need to communicate to other ‘worlds’ because they weren’t connected in any way.

 

At the age of 9 years, I was given nutritional supplement in the form of large doses of Vitamin C. I started to develop a lust for information, became aware that meaning existed. I heard more words in a sentence and moved from the ‘Auti’ (Autistic) range to the ‘Aspi’ (Asperger’s) range.

 

At the age of 13 years I could feel when people weren’t sitting well with their feelings. TV commercials became my spiel; I learned the dialogue from sitcoms. I was developing what is known as ‘pure characterization’ that I was learning to perform in the absence of knowing self. Emotionally I was still about 3 years old. I would become eaten up by ‘exposure anxiety’ my flight/fight response cut off any expression. I had to be taught strategies to tune out my awareness and let the behaviours come out.

 

When I was 25 years old, I discovered I had food allergies, intolerances and mineral deficiencies. Treatment brought about a ‘fragmented reality’ and I spent the next 13 years writing and formulating words.

 

At 30, I developed a simultaneous sense of self. “I had touched the heaven of the social world, and saw sad people waiting for me to join their world.” Now, at 38 years old I am sorting out my immune and digestive systems, the good sticky tape is holding, I am still in a constant adrenaline state. My emotions are possibly still around 3 years old, and not sure about sensory or cognitive development. But I can now recognize people when they change their clothes.

 

Darren White

Let’s start with what happened in pre-school times when I lived in Clifton. At that time I used to hate small shops because my eyesight used to make them look as if they were even smaller than they actually were, and they only looked about one square metre in area. At the age of about two, I could say a fair number of words but hardly any full sentences. I was rarely able to hear a word or two at the start and understand it and then the next lot of words sometimes merged into one another and I could not make head nor tail of it. This was a trick, which my hearing often played on me, and there will be more of that later. I used to like listening to music. Maybe so because my hearing did not distort it as it did to most speech and it also sounded nice. So much for my preschool days.

 

Now for when I started at nursery school. This is the second pre-school paragraph. I did not get on very well at nursery school. My eyes did not play so many tricks on me there as they had before, even though on bright days my sight blurred. Another trick which my ears played was to change the volume of the sounds around me. Sometimes when other kids spoke to me, I could scarcely hear them and sometimes they sounded like bullets. I thought I was going to go deaf. Whatever went wrong I have not the faintest idea. I was also frightened of the vacuum cleaner, the food mixer and the liquidizer because they sounded about five times as loud as they actually were. Life was terrifying in those days. So much for preschool days.

 

Now off to school. Once when I was being clapped in the first year of infants, it sounded like a clap of thunder and I jumped onto the teacher’s knees with fright. Shortly after the start of the middle infant class (i.e. the second year), the class went off on a trip to Bristol Zoo. The bus started with a clap of thunder, the engine sounding almost four times a loud as normal and I had my hands on my ears for most of the journey. We finally arrived there. It was a very bright day and very hot. My eyesight blurred several times that day and once I could see no more than a yard in front. I jumped out of my skin when the animals made noises. When we were going back, my ears were making noises sound quieter, rather than louder, as I could not hear the bus start.

 

I was often lazy at school because sometimes my ears distorted the teacher’s instructions or my eyes blurred to stop me seeing the blackboard properly and the teacher would say “on with your work, Darren.” In that year (second year infants), I broke my collarbone falling off a radiator. My eyes were showing a wide windowsill where the radiator was and I sat down, falling off instantly. At last things to better but I thought it happened to everyone and I told no one. I hope this autobiography helps other children with a similar problem to mine.

Extra Notes

I have some extra things to say, with reference to the first lot of information. I can now recall that one could sometimes refer to my vision and hearing as being like an “untuned television”. Once I was at a mother and baby club. I didn’t like it because of all the people talking and it sounded like thunder (I said that in the other passage too). That was the same reason why I didn’t like going to town in my early days, all the noise was terrible.

Now for an extra reference to something in the previous passage. When I broke my collarbone falling off a radiator, I didn’t feel any pain at all during the time-span between the incident happening and going to sleep. When I woke up I had a dreadful pain in the shoulder and I had to go to hospital.

 

I also remember one Christmas when I got a new bike for a present. It was yellow. I would not look at it. Extra red was added to the colour making it look orange and it blurred upwards, making it look like it was on fire. My favourite colours were those I could see more clearly than others. I also couldn’t see blue clearly. It looked too light and it looked like ice. (Imagine the sea on a sunny day; it would look frozen over, in spite of the sun.) The bike was repainted purple which I liked better because I could see it more clearly.

 

I never used to like being picked up and cuddled. I screamed as though I was on a roller coaster if anyone picked me up. I also hated it when my teacher, Mrs Ingham tried to make me hold my pencil properly or my parents tried to make me do up my laces or shirt buttons. They had no idea what was wrong with me at the time. And, since I thought it happened to everyone, I didn’t tell anyone. Nevertheless, I found such treatment excruciating.

 

I don’t like pressing my lips on spoons or glass hard either.

That is all I can think of for now.

 

Ms Wendy Lawson

Wendy says her school report used to read… “Speaks out of turn, misreads the intentions of others, doesn’t pay attention and misses the point, is quickly tired and easily overloaded”

 

She expresses her point of view now that many simply state that he/she just needs to pay attention. Non-autistic children are aware of themselves, but what is attention? There are two main types of cognitive (thinking) styles just in relation to autism. Which one fits you?

 

Non-autistic person's cognitive styles enable them to:  look and listen, have a divided attention, be aware of self and others and emotions etc inside and outside of your body. They possess executive functioning skills, they have the ability to plan ahead, organize oneself and be mindful of another’s emotion. They have a central coherence and get the broad picture in one shot, it is less intense, they are not as focussed on details and there exists links to the timing of events, wants and desires. Attention distribution is part of the polytropic strength, with this global attention and map of oneself. However, a difficulty can be in the social arena, often they are so connected to others and worried about how they look and appear that it can be time wasting and tiring.

Autistic person's cognitive style means they have single attention, very focused mind. Attention is all in one place, attention is a scarce commodity, one’s interest takes precedence. With autistic people, their interests dictate and that drives them to organize and plan. Thinking ahead can only occur when a routine is in place. Coherence is not weak, just some signposts are missing. To assist this type of thinking there is a need to order and orchestrate, attention is very tiring to them. This organised, orchestrated rigid structure needs to be made fully accessible to them like wheelchair ramps, this is a learning need. Their single attention is not their choice; they are often labelled as “selfish, only born to please only themselves, egocentric and eccentric” but they just need help to form the connections, put in some ramps. It is possible that there is room on this world for both types of thinkers.

 

Wendy uses the analogy of describing the difference between the two thinking styles. If you have two brick walls and one wall has a few holes and the other has only one hole, then you take a bucket of water (information) which wall will fill up first? The one hole wall of course… there are indicators that once the autistic child’s hole is full, then low level behaviours like rocking, humming, giggling, flapping starts to occur. If this is identified early and the triggers are not missed the caregiver can step in and possibly help to avoid high level behaviours and high risk situations from occurring.

 

In the classroom, one must respect the teacher and the student. These children still need rules, don’t tiptoe around them. However, if you reduce the noise and increase their personal space this will help. Teach appropriate communication and use their particular interest constructively not destructively…one child that Wendy knew only was interested in dog poo, now that interest could have been ignored and dismissed as unacceptable interest, however, working through this interest they could teach the child maths, languages, geography, diet…if you take away their only interest you take away any starting point, now after two years the child has moved on to study the anatomy of the dog and would like to be a vet!

 

Her quotes were 'on behalf of the autistic world':

 

Locate my triggers and make a stressor profile just for me

Teach me to recognize my own low level behaviours (? using a heart rate monitor - the person can take note when stress levels are rising by noting increase in heart rate)

Help me develop internal control eg, put hand up even if it wasn’t on the timetable.

Teach me about the interest of others.

Don’t compete, share with me.

Teach me concepts- say ‘attend to me’ rather than ‘pay attention’  -If you say ‘don’t’, too late I already have, say what I can do, -If you say ‘can’t’, I know I can, -If you say ‘ you can’t have that’ it’s too late I already have it, -If you say ‘spread out and make a space’ tell me what a space is?, - Don’t leave me in a world without any signposts, but don’t give me too many at once. Learn to speak to me my language as well as trying to teach me yours.

 

 

  

Cognitive deficits in psychopathology


Although there is strong evidence that autism spectrum disorders (ASD) involve cognitive deficits associated with neural malfunction that is strongly influenced by genetic factors (Bailey et al. 1996), there is little knowledge so far on just how these features ‘fit together’, or on the neural processes involved. Happé and her colleagues have tackled the matter in three ways. First, functional imaging in conjunction with specific cognitive tasks has been used to determine whether individuals with ASD used the same brain areas to understand mentalizing tasks that involved ‘theory of mind’ skills, as did normal controls. The results showed that they did not, the main difference lying in the apparently weaker connectivity between the relevant brain areas (Castelli et al. 2002). Second, they tested the hypothesis that the broader autism phenotype was indexed by weak central coherence (referring to the processing of details rather than the meaning of the whole), finding that the fathers of individuals with ASD did indeed show this pattern (Briskman et al. 2001; Happé et al. 2001). Third, they compared patterns of cognitive deficit in individuals with ASD and individuals with an attention-deficit/hyperactivity disorder, with findings showing that both showed executive planning impairments but only those with ASD showed weak central coherence. Clegg et al. (in press) showed that ‘theory of mind’ deficits of the kind associated with ASD were present in adults who had had a severe developmental disorder of language, and that problems in social relationships persisted well into adult life despite major gains in language skills. There is no question but that cognitive deficits are strongly implicated in autism and in developmental language disorders; this may also apply to milder deficits in first-degree relatives of individuals with autism. Nevertheless, many puzzles remain and findings on the neural underpinning are only just beginning to be established. It is also apparent that social cognitive differences may play a role in early disruptive behaviour (Hughes et al. 1998)." Source:
http://www.iop.kcl.ac.uk/departments/?locator=10&context=999 (accessed 07/09/07)
 

 

Balancing the tray by Lenore Gerould.

 

Those of us who have daily contact with children with autism sometimes have trouble explaining to regular education teachers or administrators, the ‘hooks’ of autism especially the kinds of support they need. You’re always trying to explain the basics. “No, moving the pencil sharpener’s location in the classroom is not what upset him. You have to understand that…” Then I came up with this analogy. Perhaps it will help others to visualise the support needed.

 

Try to imagine the child balancing a large serving tray on one up-turned hand. Every distress for that child is like a liquid filled glass you are putting on this tray. The ‘distress glasses’ are unique to each kid…but generally include things like auditory or visual over-stimulation, social interaction, ‘surprises’ or unexpected changes in the schedule, lack of clear leadership, the number of people in the room, whatever is ‘sensitive’ for that child. (Don’t forget the ability to read body language and anxiety of the adults around them!) The size and weight of the ‘glass’ for that child varies: just like the ‘distress glasses’ vary for each kid. Some things are merely shot glass size, while others it can be a two-litre jug. At some point the tray is going to start to wobble…the liquid will start spilling out of the glasses on the tray. The ‘cues’ this is happening will vary kid to kid: just as the cause and size of a ‘glass’ varies kid to kid…but generally include regressive behaviour, avoidance or ‘shutting down’, giggling or minor ‘acting out’ to get attention. Hopefully someone will help the kid rebalance that tray or remove some of the glasses. Perhaps taking a break, or allowing time to refocus or process will work, again techniques are unique to each kid. If there is no intervention, the addition of one more glass will topple the tray to the floor. The cause is not the most recent ‘glass’ you added, but the fact that the tray was too full or too heavy (the latter is why the child seems so unpredictable to some people). Our efforts should be that the kid learns to hold a bigger tray, or to do minor correction of the tray’s balance somewhat independently…but they will always carry that wobbling tray. Ignoring ‘cues’ can be disastrous, from the classroom disruptions to a major regression. When an autistic kid’s tray crashes to the floor- it is always a major event.

 

That is why, if I hear my son got highly upset over a moved sharpener and acted out, I do not want to hear he has to learn to accept change. The sharpener is immaterial, if I learn that day he dealt with a substitute teacher, a fire drill just as reading was starting, dead calculator batteries halfway through Maths, a ‘crashed’ computer in the middle of English, a late bus so he missed part of home room and some fluorescent lights in the class are half out-his tray is already full. Right-all of these ‘distresses’ are unavoidable and he’d dealt with them without a hitch: but each was another glass on his tray. Autistic kids need someone around who is familiar with them: to sense how full the tray is getting and read the cues-so there is intervention before that wobbling tray topples to the floor. That is why the type of support for these kids is critical-not just a ‘hot body’ nearby- but the right ‘hot body’ whom they can trust will help balance and who knows the ‘hooks’. For all of us, life is a balancing act, but for the autistic kids the glasses generally break when they hit the floor and it takes a whole lot longer to clean up the mess and get a new tray.

 

 

Autistic Children

 

"These children often show a surprising sensitivity to the personality of the teacher.  However difficult they are under optimal conditions, they can be guided and taught, but only by those who give them understanding and genuine affection, people who show kindness towards them and, yes humour."

 

Hans Asperger, 1944

 

“Put aside the academic three R’s (reading, writing and arithmetic) and replace these with Living, learning and loving. Put aside your perceived expectations of parenthood and survive” (Junee Waites, Smiling at Shadows) 

 

 

 

CONSIDER WHAT IS HAPPENING TO ALL CHILDREN LIVING IN TODAY’S WORLD…

 

1. Stress from Social changes…Broken homes, different family types, gay families, single mothers, single fathers, blended families; step parents and/or step siblings, relocations – new homes, new schools, new areas, new country, new jobs for parents, language barriers, cultural differences, racial differences and religious differences.

 

2.Stress from Social expectations…Parental pride, sibling rivalry/competitiveness, academic expectations, sporting expectations, other extra-curricular expectations e.g.. Dancing, musical abilities, scouts, girl guides.

 

3. Stress from environmental factors…High toxicity levels, Low nutritional levels in food-even ‘organic’, Unsafe drinking water, Known Carcinogens and other dangerous chemicals in household cleaners and personal care products and cosmetics, Proteins in Vaccines, Toxic chemicals in modern day pharmaceutical drugs, Air pollution from industrial waste, Less oxygenated air available, and Electromagnetic Radiation from microwaves, TV’s, Radios, Computers and Mobile phones and from other electrical sources both inside and outside of the home such as power points, electric meter boxes and overhead power lines.

 

Every Individual is made up of a different chemical composition; we all react differently to these environmental and social stressors. Children may have a genetic predisposition to ASD, but the triggers will be different, it may only take one thing that causes it in one child and a combination of things in another. ASD children present with some generalized symptoms, but their condition varies greatly from mild to severe.

 

 

THERE IS A NEED TO LOOK AT ALL THE PLAYERS IN THIS CYCLE OF STRESS, DESPAIR, FRUSTRATION AND IMMENSE JOY…

 

1. PARENTS…financial burden, emotional strain, guilt and anxiety.

2. CHILD WITH SPECIAL NEEDS…anxiety, stress, doesn’t understand effect of his/her actions and behaviour of others.

3. SIBLINGS…Remember the siblings-‘Handle with care’ they have ‘special needs’ too, especially self-esteem and self-confidence. They often have extra responsibilities, have to grow up quicker & parents may spend less time with them which could lower their self esteem if they feel less special or less loved, could be frustrated or angry at sibling with disability at times and overprotective at other times.

4. SCHOOLS/PRESCHOOLS AND EDUCATIONAL INSTITUTIONS…lack of understanding, misunderstanding, often no real support for class teacher, teacher may feel it reflects on his/her own teaching style being inadequate, also stress and strain on other class members because of child with special needs being a disruption or distraction in class.

5. HEALTH CARE PROFESSIONALS…Paediatricians, Psychologists, Speech Pathologists, Occupational Therapists, Play therapists, Bowen therapists, Chiropractors, Nutritionists, Homoeopaths etc…all are ‘specialists’ and can be very beneficial to our children, but can only offer so much help or assistance and can get frustrated at the limited consultation time with your child; which results in a lot of ‘homework’ for the parents.

 

 

 

FINDING A WAY TO MAKE IT WORK…(Charles Hart, ‘A parents guide to Autism’)

 

Observe individuals, not just stereotypes

 

There are different approaches worldwide.

 

We are all gaining knowledge and learning together daily.

 

Needs are different for 0-3yr olds, 4-7yr olds, 8-12yr olds, 13-17yr olds and adults.

 

Force will never work; a child will only learn when they are ready.

 

Accept that it is a lifelong condition.

 

Good to be positive; but remain realistic and always ask questions.

 

Don’t sell your car/house just to get treatment or something "guaranteeing a cure".

 

Aim for some level of independence. E.g. toileting, eating etc

 

Don’t assume that he/she knows - explain over and over.

 

Aim to make them feel they are in control.

 

Get professional assessment updated from time to time

 

Spend quality time with the siblings

 

Always explain to other’s what you are trying to do.

 

Accept that some close family members and friends may be non-acceptant

 

Go to parties and social gatherings, but explain that you may have to go home early.

 

Always listen to your child.

 

 

Further research articles for parents/caregivers:

 

 

Kearney & Griffin. (2001). Between joy and sorrow: being a parent of a child with developmental disability

 

Quotes from article:

 

“Whilst the last decade has seen radical changes in the conceptualisation and theorising of disability…the consequences for parents of disabled children have been limited because of the continuing dominance of medical discourse which views disability from an individual and tragic perspective.”

 

“Traditional theoretical approaches that influence professional interpretation of parental responses to having a child with developmental are:

 

“Uncritical application of these theories in the interpretation of the behaviour of parents of children with disabilities has negative implications.”

 

“Parents can be labelled as responding pathologically. It is not unusual to hear professionals use expressions such as: ‘They’re not being realistic’ They won’t accept the child’ ‘They’re shopping around, looking for someone who’ll say there’s nothing wrong’

 

Penelope Kearney’s community nursing practice working with many families with disabilities resulted in her dissatisfaction with the prevailing interpretive paradigms and this led her to question the conceptual base for the impact of disabilities on the lives of families.  She discovered that: “families generally managed their lives cheerfully and constructively and, although there was some pain, they mainly dealt with it. Some parents made an enormous impact by their energy, strength, optimism and humour.”

 

 

Grant and Whittel. (2000).

 

“A recent review of family adjustment research over a 20-year period concluded that, although the language of stress, burden and ‘disabled families’ appears to have declined, there has been relatively little evidence of concomitant increase in the language of family well-being, care giving satisfaction and resilience” (Helff & Glidden, 1998, cited in Grant and Whittel, 2000)

 

“Beresford’s (1994) research provided a refreshing antidote to stress-focused family care research in identifying a range of caregiving satisfactions in families with disabled children, amongst them being those intrinsic to caregiving itself, those related to seeing their child making ‘small’ achievements, especially when these contradict the prognosis of doctors, the ability to enjoy a ‘normal’ everyday life and ‘drawing strength’ from the expectation of decreased demands in cases where prognoses were good.”

 

After extensive scanning of literature, Grant and Whittell (2000) concluded that there were five general points, which can be made about how families seem to cope with disability:

 

FOUR AREAS OF NEEDS IN HUMANS (CHILDREN AND ADULTS)

 

PHYSICAL NEEDS…Food, Clothing, Shelter, Exercise (playing), stimulation, body awareness and hygiene.

 

EMOTIONAL NEEDS…Love and affection, to know they’re wanted, to have positive self esteem, to learn to use and express emotions, to trust their conscience and get credit for their achievements.

 

SOCIAL NEEDS…To interact with others, learn sharing, toilet habits, respect for others, social skills involving body control, appropriate behaviours, ability to make and keep friends and recognize how their behaviour affects others.

 

COGNITIVE (INTELLECTUAL) NEEDS…To understand that they exist independently, to understand the existence of the rest of the world and satisfy their curiosity by having questions answered, to manipulate the outside world by solving problems and ‘learn through doing’ with an adult setting safety limits.

 

 

Now, let’s look at these 4 areas of need in relation to those with ASD …

 

Physically, They often need to be told when to eat (aren't aware of feelings of hunger), shower (unaware of need for hygiene), or put on clothing appropriate for the weather (often want to FEEL the cold in winter or FEEL the heat in the summer), These automatic physical responses appear shut off / disconnected.

 

Emotionally, Exposure anxiety is a big emotional and physiological conflict within ASD children. May actually want a cuddle but feel frozen to act.

 

Socially, ASD children may prefer adults because they are more predictable and  ‘in control’. The inability to interact socially is a core issue in autism. People who lack normal body maps may not be able to build consistent mental models of the world, Dr Belmonte said. They may not be able to integrate sights, sounds, smells, touches and tastes. Tito writes, “ I can concentrate either at what I am seeing or what I am hearing or what I am smelling, it felt nothing unnatural to me until I realized that others could simultaneously see and hear and smell…(New York Times, Nov 19, 2002).

 

Intellectually, story of Tito (a 14yr old Autistic boy) wrote… “ When I was 4 or 5 years old, I hardly realized that I had a body except when I was hungry or when my body got wet in the shower. I needed constant movement, which made me get the feeling of my body. The movement can be of a rotating type or just flapping my hands. Every movement is a proof that I exist. I exist because I can move.” Tito seems to lack a sense of his own body, the kind of internal map, Dr Merzenich said, that normal children develop in their first few years. The maps involve brain regions that specialize in the sense of touch and movement and are widely connected to other areas, and they are highly dynamic throughout life, changing in response to everyday experience…(New York Times, Nov 19, 2002)

 

 

 

 

 

 

SUGGESTED PROGRAM… IT IS EXTREMELY IMPORTANT TO NOTE THAT ALL THE NUTRITIONAL SUPPLEMENTS AND OTHER THERAPIES HAVE TO BE INTRODUCED VERY GRADUALLY OVER A PERIOD OF A FEW MONTHS TO AVOID ANY ADVERSE REACTIONS. THESE INDIVIDUALS ARE ALREADY SENSITIVE TO CHANGE, SO CARERS MUST UNDERSTAND THIS TO ENSURE THE SUPPLEMENTS AND THERAPIES ARE THE MOST EFFECTIVE.

 

What the nutritional supplements and dietary changes aim to do is to assist digestive and immune systems and eliminate any possible stressors that may be exacerbating the problems from a physical level. If the individual feels better and their physical body is working at it’s optimum, it would be a logical assumption that the individual would be in the most receptive state to work with any other programs and therapies and hopefully be less oppositional and resistant.

 

  1. Use a superior Kidney Tonic***  to improve emotional stability and control of moods. 1 tab/day or less if child is under 4 years. This is in support that some children with ADHD suffer depression and ASD children suffer from ‘exposure anxiety’, the flight/fight response is never at rest and they are in a constant adrenaline driven state which puts a huge strain on the kidneys and adrenal glands.
  2. Use a powerful antioxidant*** and START WITH A VERY SMALL AMOUNT. About ¼ tab every second day. This is in support of evidence that suggest that because of modern day living, antioxidants are vital to assist the body to cope with the many toxins and carcinogens that attack us from many areas such as air pollution, water pollution and chemicals in personal care products, food and clothing, new cars and new furniture and household cleaners and washing detergents. Radiation from TVs, Computers, mobile phones and microwaves.
  3. An organic plant based liquid mineral supplement*** is used to restore healthy bacteria in the digestive system. Small amounts throughout the day for 3 months and then can go on to a colloidal supplement*** for long-term maintenance of mineral health, once the healthy bacteria are restored. (To support evidence from Dr Robyn Cosford lecture at Autism Congress 2001. Her research now links long term antibiotic use for children which leads to gastrointestinal disturbances through inadequate nutrition or illness and this strips the healthy bacteria in the gut and because this is not present peptides (small proteins found in vaccines) can be reabsorbed thru lining of intestines back into bloodstream and once they enter the brain, they become neurotoxins and can have devastating effects to the child's development and behaviour. The plant based mineral supplement helps restores healthy bacteria and a  colloidal supplement can maintain this and gives the body all its essential minerals required for optimum growth and development that children need which we no longer obtain from their diet, no matter how ‘well’ we eat or how ‘organic’ the food is.)
  4. Essential Fatty Acids (E.F.A) supplements (An article from Lancet, June 1995, August 1995, and American Journal of Clinical Nutrition, 1995, report evidence that ADD and Autism Spectrum persons have low levels of essential fatty acids in brain, Omega 3 etc in Essential Fatty Acid supplements boost these to a healthy level.)
  5. Make dietary changes for life. Avoid dairy and wheat/gluten as much as possible. Avoid preservatives and colours in food. Follow ‘Fed Up’ book by Sue Dengate guidelines as closely as possible and purchase the Chemical Maze Booklet by Bill Statham to help you out when grocery shopping (the small book can fit in your handbag or pocket).
  6. Install Water Filter (Wellness Water Filter system is highly recommended) or buy Unique bottled water
  7. Limit exposure to modern day toxicities…change to safe personal care products,  Limit exposure to TV, Computer, Mobile phones and microwaves, safe household cleaners and washing detergents.
  8. Massage Therapy. Do story on child's back whilst maintaining peripheral vision, because touch is so challenging to ADHD, ASD children.  Basic body programme (massage) contact, Stephanie Lord: Heathermount@Compuserve.com
  9. Teach Buteyko therapy. (With a qualified Buteyko practitioner) Stress/anxiety causes a constant lack of oxygen to all systems of body.
  10. Once this is tolerated, Bowen therapy and Sound Therapy (‘bells’ CD) to assist with any postural difficulties that may be present.
  11. Sound Therapy (28 min CD) once/week. Do not use if child is on Ritalin, Dexamphetamine, any antidepressant, or mind altering drug. (Contraindication for using these sounds) (Can assist with sleep patterns, postural alignment) Contact Mark.
  12. Listen Therapy and Homeopathy to reverse negative effects of any vaccinations (Can cause auto-immune over response and proteins become neurotoxins)
  13. Commence Social skills Program, Video programming for ‘catching up’ social/play skills. Contact: nicolekingston@hotmail.com
  14. Interactive music and interactive play programs and peer group sessions with schools etc. Ms Kathryn Sandy (speech pathologist) and Ms Judith Gearon (Special Education Teacher) @ Kalparrin Early Intervention Program.
  15. Recommended further readings:

         

Recommended magazine subscription: Informed Choice Magazine. Contact: http://www.informedchoice.com.au See issue: Vol.1 No.2 2003 for special feature on Autism/ADD.

 

 ***Contact Mark for further information on any of the suggested supplements.

 

© Alison Lunnon 2003.