If you have been given this brochure, you may have just been told that your child exhibits autistic traits or features and is possibly affected by Autistic Spectrum Disorder (ASD).
You will have hundreds of questions spinning around in your mind and the reason for this brochure is to try and give you some answers, guidelines and reassurance. This brochure has been written by parents of children with Autistic Spectrum Disorder, therefore it has been written with empathy and understanding for the situation you find yourself in at present.
You may well have already visited several different doctors, and have been presented with a wide range of diagnoses. Sadly, this is a common pattern and is chiefly due to a lack of understanding in the medical field, concerning ASD. This matter is being addressed and as difficult as it can be, try not to despair; we have all been along that path and there is light at the end of the tunnel.
There are two points that you must get very clear in your mind. Firstly, your child’s condition is NOT your fault and secondly you are most certainly not alone!
The best thing you can do for your child and your family is to find out more about ASD. You will find that once you know more about this condition and what you can do about it, you will start to feel more confident and in control. Listening to the advice that professionals offer you is important, but it is equally important that you are empowered through knowledge, to make your own informed decisions. You are the best advocate for your child.
What is Autistic Spectrum Disorder or ASD?
ASD is a complex and variable developmental disability, which occurs as the result of disordered brain development and function, altering the child’s quality of development in the areas of communication, social interaction and imagination skills. ASD is found to be 4 times more common in boys than in girls, knowing no racial, ethnic, economic or social boundaries.
ASD manifests as a wide range of characteristics, presenting at different levels of severity. No two children with autism are the same, so whilst you may find yourself comparing your child to another child with ASD, be aware that your child’s path of development will not necessarily be the same as for that child.
You will hear the term "Triad of Impairments". This triad is typically associated with a narrow, repetitive pattern of activities and resistance to change in things that directly affect the individual concerned and it manifests as an impairment in the quality of development in these three areas; Social Interaction, Language and Communication and Behaviour and Imagination.
In addition to this Triad of Impairments, you may well observe the following additional features:-
Children with ASD usually have accompanying learning difficulties. The range of intellectual abilities amongst children with ASD is vast.
What causes Autistic Spectrum Disorder?
This question remains unanswered. Internationally, many different angles of research are being implemented, but no definite answer has been found as yet.
A very important point that must always be remembered is that ASD is definitely NOT psychological; it is NOT the result of bad parenting and children with ASD do not choose to misbehave. It would appear that ASD occurs as the result of varied and different biochemical causes and presents as a malfunctioning of the brain.
What is the prognosis?
To date, ASD is not curable, but it is treatable. Intensive team intervention and an individualised, specialised education plan must be implemented as early as possible, to ensure the child reaches their full potential in life. The earlier the correct and appropriate intervention, the better the prognosis.
ASD is a disorder which changes with the age and stage of development of the child and therefore it is close to impossible for the professional to provide you with an accurate prognosis at the time of diagnosis. Your child’s individual development over the years, as well as the implementation of different intervention strategies, will serve as a guideline for your child’s prognosis. It is important not to have unrealistic expectations, but at the same time, not to give up hope.
I cannot believe this is happening to my child and our family.
Feelings of denial, sadness and anger are typically the first reactions that we as parents experience. The “messenger” - usually a professional, who has had to tell you that your child may have ASD, is usually the person who receives the backlash of our reaction.
Aggression and tears usually follow on pretty fast, followed by a fighting mechanism. You will find yourself feeling lost and confused, possibly devastated and depressed.
These reactions are all quite normal and the need for support from family, friends and experts must not be under-estimated. The desire to think and talk this whole new concept through, will be of paramount importance to you.
Finally, you will move towards acceptance, adaptation and reorganisation. You may actually find a sense of relief; that eventually you know the situation that you and your child are faced with. You will have good days and you will have bad days. At the beginning you will have a lot more bad days than good days, but this will improve; the number of bad days will decrease and the number of good days will increase as time goes by.
Parents of a child who has been diagnosed with ASD, almost have to go through the process of mourning the loss of a “normal” child and coming to terms with the“new and different” child that now stands before them.
ASD is not always obvious before the age of 18 months, or even up to the age of 3 years, so as a parent you have to adjust, usually with disbelief, to the fact that your baby or toddler is-
changing and the dreams which you have held precious prior to the diagnosis, are now being threatened.
You may be tempted to start desperately searching for help, cures or even another diagnosis. Turn to those of us who have been affected by this disorder. Be aware that there are a lot of “Old Wives Tales” that promise miracles. There are also many “salespersons”, who seem to take advantage of our desperation. Think carefully and investigate fully, before rushing out and selling your house, to follow rumours of cures around the world.
What will other people say and think?
Does it really matter? You love your child. There is no social disgrace in having a child with a disability.
As ASD was only officially described in 1943 by Dr Leo Kanner, it is a disorder which is often unknown to many people over the age of 60 years. As a result, you may find the older generation may be confused and unaccepting concerning the diagnosis.
When your child is behaving “differently”, people may well not understand that your child is not just misbehaving and that he/she has ASD. This can be due to a lack of an outward visual cue that is often present with other forms of disabilities e.g. a blind person has a white stick, a deaf person has a hearing aid etc.
Some people may say to you that your child is just naughty and needs a good spanking. Keep your cool! You will soon find out who your real friends are. Stick to them, appreciating and benefiting from their friendship and support.
What medical tests / procedures should be considered for our child?
It is important to make an appointment with a doctor or multi-disciplinary team who specialise in ASD, for a correct evaluation and diagnosis. We would recommend you contact the below listed schools or Autism South Africa, for advise on the correct channels of referral.
The schools each refer to their own specialised assessment team, which evaluates the children as regards a plan of action and effective intervention. This is an essential path to follow, as each child with ASD has a unique set of individual educational needs and on the basis of an individual assessment, informed decisions can be made as to the optimum way to meet your child’s requirements.
Case conference - a survival guide!
Feedback meetings or case conferences can be quite a traumatic experience for parents. So here are a couple of hints that will hopefully make these meetings a little easier:-
1. Be prepared:
For a couple of days or so before your appointment, have a pen and paper close at hand, so that you can jot down questions you would like to ask. All too often, we try and store questions in our heads and then the nervousness of the case conference causes these questions to hide in the back of our mind, to pop back into our memory in the car on the way home!
Keep all your child’s reports, test results and ages at which milestones were obtained etc in a file, in date order and take this with you.
If possible make sure that both parents can attend these case conferences, or if this is not possible, consider taking along a relative or a close friend for support.
2. On the day:
Take writing paper with you, to write notes as the interview takes place. Wear clothing that is comfortable and makes you feel emotionally strong and confident.
If both parents attend the meeting, try not to sit next to each other, so that you feel like frightened little rabbits in a corner! Try and sit opposite one another, so that you can visually communicate and exchange glances of reassurance and comfort.
As far as it is possible as a parent, listen objectively and carefully to what the professionals are telling you. Don’t be afraid to ask questions or for explanations of medical jargon. If you have a list of questions, make sure you immediately write down the answer next to your question.
If two of you are present at the meeting, both of you should take notes, this way should have a pretty accurate record of the meeting.
If time is running out and you have not asked all your questions, either book another appointment for as soon as possible, or else leave behind your list and ask them to please contact you with the outstanding answers.
When you leave a Doctor’s room, X-ray department or wherever, do your utmost to take home the reports and films etc. If this is not possible, then at least remember to ask for a copy and follow up on this. These reports could be required at a later stage and this may well prevent your child from possibly having to go through repeat procedures.
Remember that the professional in front of you, or the assessment team are there to help you and your child; they are on your side!
3. After the meeting:
Read your notes soon after the meeting, as you may have missed something that you should have written down. At this stage the varying points should still be fresh in your mind. What you can do is write a summary of what you understood from the meeting and send this to the Doctor or assessment team, asking them for confirmation of your perception.
There are no specific medical tests for ASD. The diagnosis of this condition is made by experienced medical practitioners and multi-disciplinary teams using internationally recognised criteria. Therefore no scientific test can be done to “prove” a diagnosis.
There are certain tests that are recommended to rule out the possibility of other conditions, or that may point to problem areas that could be exacerbating the problem. Not every child needs to go through all these tests, but it is important to discuss the suitability of these tests with the informed doctor or assessment team.
This test records brain wave activity. Some children with ASD suffer from seizures that may not necessarily be evident on general observation. Seizures are treatable using medication and it is important to identify whether there is any abnormal electrical activity in the brain and then treat this accordingly.
Brain activity abnormalities can also be the cause of “temper tantrums” and abnormal sleep patterns.
CAT Scan and MRI (Magnetic Resonance Imaging)
These tests can detect any structural problems in the brain.
Your doctor may recommend one or more of the following blood tests:-
Immunological dysfunction: You may want to test your child for certain allergies, such as gluten, casein or lactose, which may be affecting their behaviour.
INTERNATIONAL AUTISM ORGANIZATION
It is worthwhile joining various international associations and thus obtaining their regular publications. These organisations provide additional excellent resource centres. Below we have listed varying international organisations whom we found very informative and helpful:-
National Autistic Society - United Kingdom
393 City Road
This society produces the following magazines / journals:-
This organisation also has a comprehensive publications list, listing books, videos and tapes that are available for purchase.
Avenue E. Van Becelaere 26b
Autism Society of America
7910 Woodmont Avenue. Suite 650
Autism Research Institute
This institute is headed by Dr. Bernard Rimland, Ph.D. and is a most interesting resource centre. Dr Rimland focuses on a wide variety of treatment methods and is a great believer in dietary and vitamin therapy. The Institute’s monthly jounal “Autism Research International” makes for most thought provoking reading.
4182 Adams Avenue.
SAN DIEGO CA 92116. USA
Autism Society of North Carolina
This organisation has an extensive list of publications.
How can we help our child?
First and most important of all, love your child for who he or she is. Helping and loving a child with ASD can be a very demanding and thankless task at times, but there are many rewards waiting for you further down the line.
Gather information on ASD, so that you can learn what it is all about. It makes a radical difference to the relationship with your child. You will learn to understand why they can and cannot do certain things, why they react the way they do and what you can do in the home to help your child.
Children and adults with ASD generally struggle to communicate their feelings and thoughts well. There are a few adults with ASD, who have written books about how it feels to be affected by ASD and these books provide us with a wonderful insight into our child’s minds.
As parents, we often feel that we are very much alone; that our child is the only child that has bizarre and inappropriate behaviours. It is not true! Reading books written by other parents of children with ASD brings great comfort and many giggles, as you read the experiences of other families whose children manifest similar behaviours to your child.
Talking to other parents can be painful at first, but as you meet other parents of children with ASD that you can relate to, you will find great comfort in the exchange of ideas and experiences. It also makes you realise you are not alone, that there are many other parents out there who are in a very similar situation.
It is a good idea to keep in mind that a child with ASD is affected by the Triad of Impairments, and thus if we look at the areas affected, the following brief guidelines should be of some assistance:-
Doing your utmost to make your child as socially acceptable as possible is one of the biggest favours you can do for your child. This will improve the quality of his life, as the better the child’s social skills, the better people will respond to your child and thus the happier your child’s life will be.
Try and ensure that your child’s day is as predictable and structured as possible. Children with ASD often do not cope well with change, therefore try and establish a routine in your home, so that your child will be provided with a sense of predictability. If an unexpected change has to occur, try and explain this to your child either verbally or visually and then support him through the adjustment period.
Explain the manifestations of ASD to your other children, your extended family and friends. This will help them understand why your child behaves the way he does and why you are conducting your family life in a different way. Teasing and bullying from siblings and their friends must be prevented as much as possible. This can be avoided by educating and informing those concerned.
Be aware that the child with ASD will require a lot more of your time and attention and this can cause jealously to manifest amongst siblings. Try and take time to spend special, individual time with your other children, away from your child with ASD.
It can be hard for parents to accept that their child does not seem to want to look directly at them or does not want to be held. If your child is not keen on physical contact, introduce touching and holding slowly and gently. If your child pulls away, let go and try again a little later and gradually try and increase the length of time. Also try different forms of touching and holding to find out which type your child prefers. The introduction of fun games that involve holding and touching is a way of subtly increasing physical contact.
Children with ASD often seem to have no real desire to want to be involved in communication. They also have difficulty in understanding the verbal word, gesture and body language. Babbling is an important part of your child’s development and thus this must be encouraged and made to be seen as fun. Use the daily routine as a way of helping your child to make sense of the language they are hearing around them. Use a lot of visual cues with the words as you use them.
Encourage your child to “take turns in conversation”, whether it be babbling or just noises. This will help your child understand the two-way process of communication.
You want to encourage your child to try and say words, so promote this process by offering a lot of praise at any effort at speech and don’t correct the child each time the word does not come out quite right.
For a child with ASD, who seems so wrapped up in his own existence, promoting communication concerning their own needs is a good source of motivation. Make use of straws and blow-bubbles etc, to encourage your child to exercise and get to know his lips and mouth.
Development of language, whether it be the spoken word or gesture takes a long time for a child with ASD. It requires a lot of patience and there will be times when you feel you are making no progress. Do not give up and try not to get despondent; your endeavours will be bring reward one way or the other. It may not be what you hoped for, but the most anyone can ask of you and your child, is that you have tried your best.
Children with ASD do not usually play with toys in an appropriate way. They do not have good imagination skills and they usually play with toys for what they are made of and what they look like, rather than what they are supposed to represent. For instance a child with ASD will probably not be able to understand how to have a tea party with a little tea set, but will rather stack them or put them all in a straight line.
A child with ASD should regularly be encouraged to expand their choice of toys. Introduce toys that require limited imaginative skills and then try to teach your child to use that toy as appropriately as possible, ie. puzzles.
Try not to get too wrapped up in making every playtime a pressured learning time. Learning can be achieved through play, but your child also needs to have fun and relaxed, unchallenged playtime.
Imitation is an excellent way of teaching new skills to a child with ASD. Encourage siblings to play their games near your child with ASD and when you are sweeping the house etc., give your child a broom and encourage him to copy you.
The UK National Autistic Society (NAS) have recently published a very helpful and fun book called “It can get better” This is a guide for parents and carers when dealing with common behaviour problems in young autistic children. Written by Paul Dickinson and Liz Hannah. Available from the NAS.
What toys and leisure activities will be beneficial to my child?
Children with ASD seem to prefer toys that involve visual/spatial aspects, such as jigsaw puzzles, construction toys, shape and colour matching etc.
Toys that are visually interesting for children with autism are:-
Physical activity is important for the child with ASD, but these activities must not rely on verbal input or the use of imagination and must be under adult supervision, mainly due to the fact that the child with ASD has no real fear of danger. Try making use of the following:-
Physical activity has been found to diminish inappropriate behaviours and has the added benefit of improving co-ordination and muscle tone.
The involvement of children with ASD in games can be quite a challenge, so start off with simple games and progress according your child’s abilities. It is important to introduce challenges into your child’s life, but the challenge must not be too great to cause frustration.
Below is a list of possible games, which starts at the top with the easiest type of games for a child with ASD and then progresses through to harder and more challenging games:-
Again start off with the simplest and then progress upwards slowly, to prevent frustration or boredom.
Leisure activities have been researched in the United Kingdom and the top 20, in order of popularity, are listed below:-
(The above suggested lists are taken from "The Autism Spectrum: a guide for parents and professionals" by Lorna Wing).
What treatments / educational options are available for my child?
There are many potentially beneficial treatments available for children with ASD, but to date, there is no “cure”. Be extremely wary of therapies that promise a cure and treatments you do not feel comfortable with.
Remember, no two children with ASD are the same, so there are approaches that are beneficial to certain children, but not to others. Fully investigate all the different methods before spending your precious money. It is strongly advised that you seek guidance from the professionals, as well as contact the organisation which deals with the approach which interests you and ask them for contact details of other parents who have participated in their programme and then chat to these parents.
Parents need to try many things, not only for the child's sake, but also for their own. A lot of parents have tried many different approaches, some with success and some without. You need to decide what options suit your circumstances, enabling you to balance doing the best for your child, whilst meeting the needs of your family as a whole. At the end of the day if you have maintained this balance, and you have not jeopardised the rest of your family, you can at least have the satisfaction of knowing you did your very best for your child with ASD.
When it comes to the day-to-day education and treatment of your child, there are basically two options that can be considered; the placement of your child into a carefully monitored specialised education programme, utilising the schools and facilities that are available, or else implementing a supported home programme.
In regard to placing your child into the schooling system, the assessment team should be able to advise which route you should investigate.
If the assessment team feel that your child could benefit from mainstream or remedial schooling, there are varying issues that must be considered when you are screening potential schools for your child with ASD:-
Questions parents should ask when exploring different non-scholastic approaches or intervention or treatment:-
Principles of evaluating methods of non-scholastic intervention and treatment of ASD:-
Below, we have listed some of the methods of intervention which have been beneficial for some people with ASD. Although there may well be overlapping, there are basically two types of approaches; one that attempts to “change the child” , whilst others attempt to change the environment for the benefit of the child with ASD. The evidence, as it is at present, favours the provision of a suitable environment, as the best method of helping the individual concerned, rather than attempting to change the individual.
Forms of intervention which have been found to be beneficial to people with ASD, are as follows:-
The option of specialised education for children with ASD is a very important factor to consider. Schools specifically catering for children with ASD, provide an environment which is “autism-specific”, structured, informed and empathetic.
Additional Part-Time Treatments:
Part-time treatments, do not replace sending your child to a specialised school or implementing a home based programme, but can be introduced as additonal forms of intervention:
T.E.A.C.C.H (Treatment and Education of Autistic and related Communication Handicapped Children). T.E.A.C.C.H is an individualised educational approach, whereby the environment is adapted and structured to promote learning at the child’s level of understanding. The T.E.A.C.C.H programme can be beneficially implemented from a young age.
Makaton (Augmentative Communication, using signs and symbols with normal grammatical speech); Children with ASD often have quite strong visual abilities and can therefore be receptive to the use of symbols as a form of communication.
Speech and Communication Therapy
These areas of expertise should also cover the areas of alternative communication methods, such as symbols, sign language and computer graphics. These methods are used in conjunction with speech and they are not intended to necessarily replace or discourage speech. Alternative communication techniques often seem to result in the “pressure” being taken off the child to verbalise. These children then seem to become more open to being taught other effective forms of non-verbal communication, which in turn can assist with the possible development of verbal skills.
In the past there have been some quite extreme forms of behaviour management, which are now seriously frowned upon by most people involved with ASD. The most recent methods of behaviour management encourage skill development, positive reinforcement and the reduction of undesirable behaviours. This is done through attempting to analyse the reasons for these behaviours and thus aiming the education and management at this level, in an attempt to treat the cause and not the symptom as such.
Many parents have claimed that there have been significant improvements in their child’s attention span and overall behaviour when the child is taking larger than normal amounts of varying vitamins. Investigators in this field, believe that certain children with ASD have a genetic or acquired metabolic disorder, which increases their requirements for varying
nutrients. Comprehensive information and correct dosage must be obtained from the relevant professionals before any Vitamin Therapy is implemented.
Dr Rimland is a firm believer in megavitamin therapy and has conducted much research in this field. There is also a product called DMG (Dimethylglycine) which has received favourable responses when used by some children with ASD.
For more information, contact the Autism Research Institute at the address given above.
Melatonin is a hormone secreted by the pineal gland, which is situated in the brain. Melatonin helps regulate the body clock. For instance it helps us to establish a regular sleeping pattern.
Melatonin has been found to be beneficial for some children with ASD who have erratic sleep patterns and are physically overactive.
This hormone must be given under strict medical supervision and advice must be sought as regards the age it is given, as there can be adverse affects on the growth hormones.
Secretin is a hormone which is essential for effective digestion. This hormone stimulates the pancreas to secrete a liquid which contains large quantities of bicarbonate. This liquid neutralises the acid entering the small intestine from the stomach; a process which is essential for the complete breakdown of certain foodstuffs.
There is possible evidence that children with ASD may not be producing enough Secretin and therefore some proteins are not completely broken down during digestion.
These incompletely digested proteins, then seem to enter the bloodstream, which results in their ability to adversely affect the chemical reactions of the brain. Certain children with ASD, have been part of experimental trials with Secretin, but to date, there is no conclusive evidence of the effectiveness of this form of intervention, as the results have been extremely varied.
AIT (Auditory Integrated Training)
This method of treatment is based on the premise that some characteristics of ASD occur because of a dysfunction in the way the child processes auditory input. Many children with ASD are hypersensitive to certain sounds / frequencies. This can cause a
distortion in the child’s hearing and thus contribute quite significantly to the child’s condition and language development.
The goal of this treatment is to reduce hypersensitivity to noise through the child listening to specific and controlled processed sounds and music. It is almost like re-training the ear and brain to hear correctly.
Home based programmes
Home-based programmes are utilised internationally for children with ASD. To date, no official local branches of these organisations have been established in South Africa. Certain parents in South Africa have received international training and are implementing differing programmes with their own children.
Please contact the provided international addresses for further information on each method who have investigated or are implementing the differing home-based programmes.
The Lovaas Method / Applied Behaviour Analysis
This is a home based programme which is gaining popularity. It is an early intervention programme designed by Dr. O. Ivar Lovaas, Ph.D. at the University of California, Los Angeles (UCLA).
The programme uses Applied Behaviour Analysis methods (ABA) as part of an intensive pre-school programme for children with ASD, where the child receives one-on-one therapy by people trained in the technique. In other words, the child is not placed in a nursery school setting. The programme focuses on imitation skills, communication and language, appropriate social behaviour, co-operative peer play and on decreasing ritualistic behaviour and tantrums.
This programme is conducted in the home environment, using volunteers or paid assistants, who are trained by qualified professionals to administer the programme.
Books to read concerning the Lovaas Method
Options Institute - Son Rise Programme Method
The Son Rise Programme was developed by the Kaufmann family in Massachusetts, USA. It is a child-centred approach where you are encouraged to enter the child’s world first in an attempt, through play, to encourage the child to communicate and inter-relate with those around him.
The programme is based on a fundamental attitude of loving and acceptance (ie. lack of judgement). The child is never confronted or treated in a judgmental way. The child receives intensive 1 :1 attention at all times from a rota of parents, family and friends, who will be required to be trained in this method before they join you to help your child.
ASD is a multi-faceted disability and as such requires a multi-disciplinary approach to determine an individualised programme for each child. The type of therapy or intervention will depend on the developmental stage and abilities of the child.
The above-mentioned therapies represent only some of the options and/or methods by which you may be able to assist a child with ASD. The results of any therapy will depend on the individual. For all forms of treatment, one must remember that some people have wonderful results, whereas others have not noted a significant effect.
As parents you are ultimately responisble for your choice of treatment or therapy. Please understand that Puterakembara has listed different approaches, but this is not an endorsement and is not a comprehensive statement of each form of intervention. Thus, we provide you with the information, but we do not take any responsibility for the people or organisations who implement the programmes.
The below list is just a few of the many books which are available on matters relating to ASD and new books are being published on a regular basis.
General Information on Autism
Books written by people with Autistic Spectrum Disorder:
Management and Educational Issues
Adults with Autistic Spectrum Disorder