The latest information on raising children with asperger syndrome or autistic disorder.
Excerpt:
Table of Contents
Introduction …………………………………………………………………………………………………………………………………. vii
About the authors………………………………………………………………………………………………………………………….. vii
PART ONE: Autism Defined…………………………………………………………………………………………………………………….1
Chapter 1 Living with an autism spectrum disorder …………………………………………………………………………………..3
Chapter 2 What are autism spectrum disorders?………………………………………………………………………………………..6
2.1 History of autism spectrum disorders ……………………………………………………………………………………………..6
2.2 What does pervasive mean?…………………………………………………………………………………………………………..8
2.3 Myths surrounding ASDs ……………………………………………………………………………………………………………..9
Chapter 3 What are the general symptoms of PDD/ASD? ………………………………………………………………………..12
3.1 Social interaction ~ social symptoms ~ social relations …………………………………………………………………..13
3.2 Verbal and nonverbal communication ~ communication difficulties …………………………………………………14
3.3 Repetitive behaviors or interests…………………………………………………………………………………………………..16
Chapter 4 ‘Classic’ autism / autism disorder……………………………………………………………………………………………17
4.1 How to spot child autism or autistic spectrum disorder……………………………………………………………………19
Chapter 5 Asperger syndrome………………………………………………………………………………………………………………21
5.1 An overview of Asperger syndrome and comparison with autism …………………………………………………….22
Chapter 6 PDD-NOS………………………………………………………………………………………………………………………….24
Chapter 7 Rett’s disorder (or Rett syndrome) ………………………………………………………………………………………….25
Chapter 8 Childhood disintegrative disorder …………………………………………………………………………………………..26
Chapter 9 Other related syndromes/disorders ………………………………………………………………………………………….27
Chapter 10 What causes autism spectrum disorders? ……………………………………………………………………………….29
10.1 Biological basis……………………………………………………………………………………………………………………….29
10.2 Hereditary/Genetic…………………………………………………………………………………………………………………..30
10.3 Pregnancy/Birth Injury ……………………………………………………………………………………………………………..31
10.4 Mercury/Toxins/Vaccinations …………………………………………………………………………………………………….31
Chapter 11 Scientific theories on autistic thinking …………………………………………………………………………………..33
Chapter 12 How many people suffer from autism? ………………………………………………………………………………….35
PART TWO: Diagnosis…………………………………………………………………………………………………………………………..37
Chapter 13 Diagnosis ………………………………………………………………………………………………………………………….39
13.1 Classification ………………………………………………………………………………………………………………………….39
13.2 Diagnosis ……………………………………………………………………………………………………………………………….40
13.3 After the diagnosis …………………………………………………………………………………………………………………..44
PART THREE: Treatment and Intervention ……………………………………………………………………………………………….49
Chapter 14 Treatment and intervention…………………………………………………………………………………………………..51
Chapter 15 Documenting. What and why? ……………………………………………………………………………………………..53
Chapter 16 Early intervention services …………………………………………………………………………………………………..54
Chapter 17 Treatment options ……………………………………………………………………………………………………………….57
Chapter 18 Most common autism treatments………………………………………………………………………………………….59
18.1 ABA Treatment ……………………………………………………………………………………………………………………….59
18.2 Relationship Development Intervention (RDI)……………………………………………………………………………..67
18.3 Occupational, visual and auditory therapies …………………………………………………………………………………68
18.4 Sign language …………………………………………………………………………………………………………………………69
18.5 Speech therapy………………………………………………………………………………………………………………………..70
18.6 Computers, toys & stimulation …………………………………………………………………………………………………..71
18.7 Physical exercise and autism …………………………………………………………………………………………………….72
18.8 Floor time ………………………………………………………………………………………………………………………………72
18.9 Neurofeedback………………………………………………………………………………………………………………………..74
Chapter 19 Alternative autism treatments ……………………………………………………………………………………………….76
Raymond Le Blanc & Hennie Volkers
vi
19.1 Facilitated communication………………………………………………………………………………………………………. 76
19.2 Holding therapy …………………………………………………………………………………………………………………….. 77
19.3 Auditory integration therapy …………………………………………………………………………………………………….. 78
19.4 Dolman/Delacato method ………………………………………………………………………………………………………… 79
19.5 Snoezelen ……………………………………………………………………………………………………………………………… 79
Chapter 20 Dietary interventions …………………………………………………………………………………………………………. 81
20.1 The GFCF diet ………………………………………………………………………………………………………………………. 82
Chapter 21 Medications used in treatment …………………………………………………………………………………………….. 87
PART FOUR: Home, Education, Leisure, Work, Independence & Planning a Future…………………………………….. 91
Chapter 22 Home ……………………………………………………………………………………………………………………………… 93
Chapter 23 Education ………………………………………………………………………………………………………………………… 97
23.1 Factors to consider when teaching a child with autism…………………………………………………………………. 97
23.2 The importance of teaching writing to a child with autism……………………………………………………………. 98
23.3 Teaching strategies for child with autism……………………………………………………………………………………. 99
23.4 Your child’s educational plan………………………………………………………………………………………………….. 100
23.5 Teaching students with autism ………………………………………………………………………………………………… 101
23.6 Giving your child with Asperger syndrome an education……………………………………………………………. 102
Chapter 24 Leisure ………………………………………………………………………………………………………………………….. 104
Chapter 25 Work …………………………………………………………………………………………………………………………….. 106
Chapter 26 Independence …………………………………………………………………………………………………………………. 108
Chapter 27 Planning a future…………………………………………………………………………………………………………….. 110
PART FIVE: A Course Of Life…………………………………………………………………………………………………………….. 115
Chapter 28 Autism and course of life………………………………………………………………………………………………….. 117
28.1 Babies and Toddlers ………………………………………………………………………………………………………………. 117
28.2 Childhood……………………………………………………………………………………………………………………………. 118
28.3 Young adulthood ………………………………………………………………………………………………………………….. 122
28.4 Transitioning to adulthood ……………………………………………………………………………………………………… 124
28.5 Maturity ……………………………………………………………………………………………………………………………… 125
28.6 Middle age ………………………………………………………………………………………………………………………….. 125
28.7 The elderly ………………………………………………………………………………………………………………………….. 126
PART SIX: Extras ………………………………………………………………………………………………………………………………. 127
Chapter 29 Adults with an autism spectrum disorder…………………………………………………………………………….. 129
Chapter 30 Who looks after the interests of people with an ASD?………………………………………………………….. 131
Chapter 31 Sexual education…………………………………………………………………………………………………………….. 133
Chapter 32 Red flags ……………………………………………………………………………………………………………………….. 141
Chapter 33 Conclusion …………………………………………………………………………………………………………………….. 142
Bibliography ………………………………………………………………………………………………………………………………. 145
Notes …………………………………………………………………………………………………………………………………………. 149
Chapter 28 Autism and course of life
Another way to look at the impact of autism on an individual is to look at its impact through someone’s course of life.
We will distinguish:
1. Babies and Toddlers
2. Childhood
3. Puberty/Adolescence
4. Maturity
5. Middle Age
6. The Elderly
In the previous chapters we outlined a picture of the nature of autism, the impact it has and the possible aids. It makes a large difference, of course, whether we are discussing with someone with autism, with the Asperger syndrome or someone with autistic characteristics such as PDD-NOS.
28.1 Babies and Toddlers
Being a baby involves rapid development in basic fields of feeling, seeing, eating, talking and walking. From a social point of view, attachment is a central feature. This means that the baby will try to attach to people in its surrounding; that means trying to bond with these people. It uses everything it has to bond: babbling, smiling, grabbing, and crying. [i] Many autistic children resist or ignore contact with their parents as a baby. They often cry, they hold their arms limp along their body when they are picked up, they hardly if ever smile, and sometimes they push the other away.
The toddler too is actively involved in keeping his caretakers near to ensure help is there when it is needed.
Kids with autism are not able to do much bonding. This makes it more difficult not only for themselves but also for their surroundings. The caretaker, usually the mother, will try to make contact with the child. A parent may feel rejected when the baby doesn’t make contact or even does not seem to be interested in making contact. The young child with autism seeks even less consolation or help and seems deeply involved within himself. Some parents will feel rejected. Others, however, will feel very close to their child because it will not break the symbiotic relationship with the caring parent.
So it is not a first example of the stubbornness phase, which is part of healthy development and is an illustration of the first separation from the parents, while the child keeps depending on the parent or caretaker at the same time.
The parent will keep supplying the help that is needed. As said before, some parents will feel rejected and others won’t. The child will keep using the parent as if the parent was an instrumental part of itself. For instance it will grab its parent’s arm and point to an object it would like to have. It doesn’t reach the point of being able to function autonomously on its own. This is another illustration of the fact that the child has difficulty in bonding in a safe manner, because this child is not able to let loose. It hardly makes eye contact, and the gaze is often seen as empty, gazing past another person or fixating on the tip of somebody’s nose. This gaze is perceived as ‘penetrating.’
Bonding is a complicated social activity and requires development of social insights. It means actively working on the ‘theory-of-mind,’ which implies the development of a theory over one’s own thoughts and feelings and those of others.
In this phase, children are not at all occupied with bonding. Sometimes they are still busy with subjects that ripen quicker with the average child. For instance the body still has to learn how to digest food, the immune system needs to be activated, their senses still need to develop further, their motoric senses need more development too, language needs to be formed and the child needs to be toilet trained.
Children with autism need a lot of energy to manage this development because this maturation passes in a slower pace. This can mean problems with being held, being cuddled, etc.
During childhood, development of cognitive skills and playing with other children is very important. Children with autism, however, are still busy bonding with people in their direct surrounding and still have problems understanding how the world turns. They are busy exploring and getting used to people in their direct vicinity and they are certainly not active in playing with each other in a social manner.
Kanner uses Frederick as an example. Frederick first pays attention to people around him and people coming to visit. When Frederick first gets to know his family he should already have been busy with finding friends at school, playing with other children in the sandbox in the playground.
Learning starts with copying actively. In its own way the child copies internally and externally what it sees and says ‘yes’ to the world around him. An autistic has problems copying and often stays trapped in what is known and familiar, showing safe repetitive behavior. The child seems to say ‘no’ to the world.
There is a tendency to stick with known territory (need for sameness) and repetition of the same behavior. Changes in surroundings are not accepted, because this makes the surroundings unrecognizable. The child is very frightened of the unknown and unexpected. This can lead to panic attacks and tantrums. Other children are often avoided because they show unpredicted behavior. This is caused by the autistic’s inability to empathize with other children’s interests, feelings and games. Sometimes the autistic child chooses a much younger child to play with. This child will have to follow the orders that the autistic child makes up according his own ideas and thoughts. Sometimes the child will adore and be totally fixated on an older favorite friend.
Children with autism are usually late in development and understanding reciprocity. As a result they ‘use’ other children for a longer period as a tool in their game without proper realization that the other child has needs of its own. They do not play games that coincide with their calendar age but often according to their ‘development’ age, which often is much younger.
The expectation that children with autism can easily get along with their peers is often too high. As a result the daily stress the autistic child feels rises. And thus daily rituals and obsessions increase.
Children with autism loose themselves often in certain subjects or manners. Trains and dinosaurs are very popular with autistic children. They give them the rest they need. Every child will have his own favorite subject. Many children will keep asking questions about their favorite topic endlessly. Sometimes certain stereotypical mannerisms will be endlessly repeated, like turning switches on and off, turning objects such as buttons, etc.
28.2 Childhood
Impairment in Language Use
Many autistic children do not reach the level of active language use. When there is no significant development in language skills before the age of six, the prognosis is dim and the child will stay autistic. Passive use of language (understanding spoken language) might be well developed, even though this might not seem obvious.
Speech develops more slowly and is filled with unripe elements and a different syntax. These children often do not talk about themselves as I but in the second or third person (pronominal reversal). They also tend to imitate adults with the same intonation or by changing each sentence in a question (echolalia). Some children copy the adult’s language perfectly without understanding exactly what the real meaning is (delayed echolalia). They often use a language with their own words and word combinations from existing words: neologism. Their voice melody is even, metallic or insecure questioning. Other people’s sayings are taken literally (literalness). Humor, jokes, etc. can thus become very threatening to an autistic child.
Impairment in the handling of information
Oversensitivity to sensory sensations makes these children often react with panic or anxiety when confronted with sudden or hefty sensations such as harsh noises or changes in light and darkness.
The skin can also be seen as a large sensory organ, and their skin isn’t considered as a division between themselves and their surroundings. They are very receptive to changes in mood in their vicinity. They can, however, shut out outside impressions by pretending to be deaf or simply pretending not being able to see you. Sometimes they will lock themselves in a cupboard. Sometimes they can become panicky or start a screaming fit due to a small scratch on their hand, while a severe injury on for example their foot will hardly evoke a reaction.
The way they handle food might also be different. They might reject all kinds of food or might for instance only enjoy porridge; their senses are often used in a sensopatic (feel and act) manner: moving fingers quickly back and forth near their ears, moving their open hand up and down in front of their eyes, losing themselves in the changing light fall.
Some may kick on hearing noises. Background sounds are often heard in a crystal clear manner. There is a weak integration of sensory input. Keeping a bird’s eye view and being able to distinguish important from unimportant things is lacking or costs a lot of effort. They often like to smell things or people and often put objects in their mouth. Remarkably, a lot of these children are fond of music or even musically talented.
Impairment in the motoric and motorial development
Motoric development of a child suffering from autism is usually delayed. Often this development shows leaps and bounds in different dimensions: long periods of status quo, then a sudden acceleration, sometimes after an illness. The rough and fine motor system is often unripe or lagging behind. You can often see stereotyped or ritual behavior like rhythmically walking back and forth. Excitement can lead to fluttering hands and tiptoe walking.
Older children often move their upper body forwards and backwards. Sudden panic or anger can lead to shouting fits accompanied with hitting, kicking or spitting on others. Sometimes auto mutilation occurs, where the inwardly directed anger can be focused on specific senses, sometimes on other parts of the body, for instance head banging. Over-activity can be alternated with periods of stillness. Facial expressions are often plain and express stupefaction. When they are small, these children often make a perfect, beautiful impression: these are princes or elf children.
Impairment in cognitive development
Nowadays it is assumed that about half of the children suffering autism function on a mentally handicapped level. Some of these children have partial, very talented powers such as a phenomenal memory for figures or certain events. Their imagination and thoughts are very visually oriented.
Working with non-speaking autistics through ‘supportive communication’ has taught us that they are capable of intelligent thoughts but at the same time they have difficulty using language as a medium to express these thoughts. It is clear that ‘normal’ intelligent tests are not fit to work with the autistic child’s different level of consciousness.
Phases in treatment
It is important to distinguish phases in development.[ii] Roughly speaking one can distinguish three phases:
1. The first phase creates the foundation for optimal functioning. A clear and understandable day structure is offered and healthy habits are developed. A central place is taken by the need for structure and boundaries, needed for functioning on a normal day-to-day basis. When the child is suffering from autism, the main accent will be on treatment in this first phase, as steps from the second and third phase are not always reachable. Children with ADS often reach the second or third phase after intensive coaching. Serious events, however, or a transition to a next development phase (like entering puberty) can lead to a (temporary) relapse.
2. The second phase follows the first phase when the child has found enough self-confidence and strength. In this phase the child has to come to terms with his or her differentness and learn to cope with it and learn to integrate it into their lives. They have to accept and understand safe coping mechanisms for anger and fear and at the same time take distance from them, because they are no longer necessary and they can be replaced by more effective coping and defense strategies that have to be learned.
Besides continued support and coaching to handle daily life, several therapies can be used to get rid of old pains and to learn how to make new choices, for instance creative therapy or music therapy. In other cases visual communication can help to develop young underdeveloped areas. Everything that helps strengthen the will of life, which helps the development of life courage and happiness, is of the utmost importance.
In the coaching of parents the emphasis will lie on recognizing certain problems the child might have.
3. The third phase consists of consolidating and integrating what is learned outside the therapeutic context, in real life, at school or at work.
It is always dangerous to assume that these children/adolescents are already there, while the newly learned capacities are still fragile. A setback when the first challenges occur is always a possibility.
It is very important for the child to collect successful experiences in ‘normal’ life in whatever setting this may be, and to experience problems that can be handled. The child will learn that life goes on and that it isn’t necessary and that it does not help to hide or to fall back on old defense strategies. The third phase comes to an end when the newly learned skills become an automatic part of one’s behavior and personality. Self-confidence will grow. There will be less or no need for stressful behavior.
Activities you can do with your child with autism
Special attention and extra patience are some of the most important virtues you must have to raise a healthy child, even if he is suffering from autism. And since an autistic child has certain deficiencies in terms of learning, you should give extra attention to the specific points he has to improve on. In view of this, there are particular activities you can adapt to develop skills that are lacking in your child.
These activities are the following:
1. Physical activities
a. Walking and simple aerobics
Most children with autism find it difficult to take the first step or make each part of the body move together as one. This is because autism affects the visual, auditory, and tactile stimuli, impairing children who have normal motor skills. In several cases, autistic children possess a low level of physical fitness since they cannot move normally and prefer to stay in their comfort zone. Providing physical activities for your child will let him develop physical fitness and minimize the effects of lack of body coordination as he grows up.
Of course, physical activities will provide healthy benefits to your child as well. The regular movements of the body will increase the level of correct response, improving the behavior of your child.
b. Body movements
Simple clapping of hands and movement of the feet are enough to start your child improving his motor skills. This is especially important if your child is between 10 months and 2 years old, because his arms and limbs should move normally to avoid any deficiencies as he grows.
c. Swimming
Swimming is considered a total body workout and is very beneficial to a child with autism. It enhances the physical capability of the body to improve movement and develop the best motor skills among all types of physical activities.
2. Mental activities
a. Puzzle games
Puzzle games improve the imagination of your child, especially in the stage of early development. These games will also improve their intellectual capacity to explore and to learn. Aside from this, puzzle games are fun and exciting for a child with autism.
b. Computer games
There are several games that are made especially for children with autism. These games can be found online and can be played for free. They are both enjoyable and educational for your child.
3. Emotional activities
a. Story telling
Although some autistic children have attention deficiency, taking time to read them stories can result in several benefits. This is because the child feels that he is cared about. Aside from this, the connection you make with your child through these activities is worth the time you spend telling them stories.
b. Walk in the park moments
If you let your child stay inside the house most of the time in his early stages of development, he may not be able to see how the outside world functions. It might induce fear about facing other people, which will add to his difficulties as he grows up. When he eventually faces the world on his own, he needs to know how the world functions. A walk in the park can introduce him to the world step by step.
Puberty/Adolescence
During puberty and adolescence, contact with one’s peers is very important. Adolescents like to experiment with finding out how the world works. Being part of a group and functioning within a group is equally important.
For youngsters suffering from autism, this is a different matter. Their experience with peers at elementary school has left much to be desired. Often they have been bullied by classmates and are weary of staying in touch with others of the same age. When they reach puberty they have just arrived at dealing with others in a manner that was okay at elementary school but does not suffice in their new environment. The games (which were useful in learning social skills) they played (as if they were real) are no longer played during puberty. People expect the youngster’s social skills to already be more or less developed for use in this stage of life to find friends and seek a partner.
Youngsters with autism, however, are very busy developing cognitive skills in this period of life. Elementary school has often provided insight in strong cognitive skills and talent on one hand and learning disabilities on the other hand. Their skills give them an anchor point and raise their interest. That is why the development of cognitive skills can lead to some peace of mind.
The transition to young adulthood is marked by the realization that one is different from others the same age and the difficulty they have fitting in.
28.3 Young adulthood
This is a period in life that is stressful, due to several changes occurring at the same time. For a young adult without autism this is a heavy task to fulfill. For a young adult with autism, this might be a period when it becomes obvious that they are not able to function on their own or can do so only with difficulty..
Starting a higher education often coincides with living on your own. Thus the inability to live on one’s own might only then become clear.
Living in student dorms or your own room outside the family surrounding means running your own household, running errands, cooking and doing administration in addition to studying.
Many students find this too difficult to cope with. Studying while doing all the things mentioned will drain one’s energy, so little to no effort will be put in developing new relationships. A new environment also implies meeting new friends and forming relationships. This is an area in which autistics do not excel.
Sometimes differences in development between young adults with autism become manifest in this period. When a young adult lives at home, parents or family members do many things without even giving them a thought. Everything happens in a well-known surrounding with the structure, rules, etc. he or she is used to. When this young adult leaves home to live alone, this structure vanishes and he must build and get used to a new structure. This appears to be quite difficult for many young adults and even more complicated for sufferers of autism.
In class teachers expect a lot more independent studying than most autistics can handle. They have difficulty planning their study and doing their study assignments.
During this phase the sense of being different and having difficulty fitting in with others has a heavy impact. Where their peers are busy spreading their wings and becoming wholly independent, young autistic adults find themselves lonely and sometimes even depressed. Their cognitive skills no longer provide a safe haven as they discover that bonding with others just doesn’t work the way they would like it to. They notice their peers, old classmates and others from their neighborhood develop relationships and form careers. They notice that their own talents are not developed to the fullest extent and that they fall behind in lifework.
Dealing with the Autistic Adolescent
Adolescence is a challenging phase of life even in non-autistic children. And it’s a challenge for both the parents and the child. Adolescents begin to feel the need to pull away from parents and develop their individuality. They may place more stock in what their peers think than in the thoughts of their parents. They challenge rules, snicker at their parents’ “old fashioned” way of doing things, and generally want nothing to do with any suggestions made by their parents. On top of all of that, there are physical changes to contend with. It is during adolescence that children begin to mature sexually, so there are hormonal issues to contend with.
Children with autism have compounded difficulties with adolescence. While they may want to break away from their parents and become more independent, they may lack the necessary skills to do so. They may also lack the ability to communicate their newly found frustrations and feelings. And, sexual maturity can lead to inappropriate behaviors, including the unintentional breaking of social taboos.
Dr. R. Kaan Ozbayrak, MD, contends that there are three factors that determine how an autistic child will react to peers in his or her adolescent years. Those factors are:
• Level of Interest: Many autistics are simply not interested in people around them. If your child is interested in his or her peers, social interactions will be determined by the remaining two factors.
• Level of Avoidance: In children who are interested in others, the amount of social anxiety they experience will determine how they interact with their peers. It may be difficult to tell the difference between lack of interest and anxiety. The good news is, once you’ve determined the problem is anxiety, it can be treated more simply than can lack of interest.
• Level of Insight: If your child is interested in others and doesn’t avoid them, his or her understanding of autism will be the key factor in how he or she interacts with peers. Children who aren’t aware of the disorder and how it affects them may have more difficulty with social interaction.
An interesting result of ASD that many parents have noticed is that children with autism are often more comfortable dealing with younger children or with adults than they are with their peers. This may be because younger children are less likely to judge them and are more accepting of autistic behaviors, so they feel safe to the autistic child. And, adults feel safer, too, because they are more likely to be tolerant of aberrant behaviors, and therefore less critical.
Managing loss of normalcy
No matter what their developmental level, most children with autism eventually see that they aren’t like others their age. This generally happens during the adolescent years. Like parents and grandparents, the child may also experience grieving over the loss of “normalcy.” It’s important for parents to understand the grieving process, and to help the child understand as well.
Those who are grieving generally experience:
• Anger
• Denial
• Depression
• Acceptance
• Adaptation
These feelings may not happen in the order listed, and the child may move back and forth between them, accepting the disorder one day and feeling angry the next. While you may be tempted to ignore the process at times in the hope that it will simply go away, that’s probably not the best step. Try to deal with the process as calmly as possible and encourage your child to talk about his or her feelings. Your positive modeling can help your child through this very difficult time.
Children with autism may become depressed during adolescence because of all the added pressures. If your child shows signs of depression, talk to a physician or psychiatrist immediately. Depression is a serious condition.
Signs of clinical depression include:
• Long periods of sadness
• Quick to anger so that family members are on edge
• Inability to fall asleep or stay asleep
• Fatigue
• Loss of appetite
• Low self-esteem
• Remarks about hating life, others, and wishing he or she were dead
• Loss of interest in previously enjoyed activities
• Withdrawal from the family
• Wrongly blaming himself/herself for things that go wrong
On a positive note, some autistic children deal with their loss by embracing their disorder and finding their identity there. They join support groups for children and adolescents or find other ways to get in touch with them, help educate others about autism, set up websites about autism, and generally help generate support for the disorder. If this is the tack your child takes, encourage him or her by finding ways to help. Or, you could get involved right alongside your child and make it a family effort. However, keep in mind that this is a time when your child will want to strike out on his/her own, so your presence may not be wanted. If that’s the case, take a step back and allow your child to spread his/her wings.
Using interests to boost self-esteem
Children with autism tend to become interested in one subject and will learn everything about it that they can. Unfortunately, that might also mean that they will bore others with incessant talking about the subject. Your child’s interests might just be a means of boosting low self-esteem during adolescence.
Instead of avoiding the subject, discover ways to use the interest to help your child become engaged in new ways of learning or interacting with others. Try to find approaches that will challenge the child. Make creativity part of the approach. Your interest in the subject and your child’s ability to teach you about it will provide feelings of pride and help the child through an otherwise difficult time.
Autism and Developing Sexuality
Although your child may not progress socially at the same time as his or her peers, his body will keep up with normal physical development. Therefore, your child will begin to experience sexual maturity at the same time as those around him/her. These changes cause very real worries for parents. These worries include:
• Fear that the child’s behaviors will be misinterpreted
• Fear that the child will be subject to abuse due to their lack of social understanding
• Fear of an unplanned pregnancy
• Fear that the child will never have the chance to enjoy a normal sexual relationship
• Fear of sexually transmitted diseases
Then there’s the inappropriate behaviors autistic children may exhibit due to budding sexuality, such as touching themselves in public, taking off clothes, public masturbation, inappropriately touching or staring at others, and talking about inappropriate subjects in public.
The best approach to deal with your child’s budding sexuality is to make up your mind to talk about it. Don’t just address the subject in passing or when it comes up; make time to sit down and discuss it. Ask your child what he/she knows about sex and honestly answer questions in an age appropriate fashion. Talk about normal behavior and behaviors that shouldn’t occur in public. Be open to listening to whatever your child has to say. It’s important that your child feel that he/she can come to you to discuss feelings, frustrations, and questions.
If talking to your child doesn’t work, ask your physician or other professionals with experience in this area for assistance. Your school may even be able to point you in the direction of resources.
28.4 Transitioning to adulthood
Around the age of fourteen, parents should begin thinking about how their autistic child will make the leap from school to adulthood. Ultimately, the goal for the child should be to lead as normal and independent a life as possible. As with your child’s elementary and secondary education, good planning is key.
Beginning around the age of 14, develop a plan geared toward making your child’s adult life successful and fulfilling in terms of career, social activity, and community involvement.
Your child’s transition plan should incorporate:
• Individual interests, needs, skills, and preferences
• Strategies for a successful life after schooling ends
• Long range goals and activities designed to reach them
• Services that will help reach goals
Again, the plan should be written down, but it shouldn’t be just words on a paper – it must involve action. Once you’ve identified areas of interest for your child that could blossom into a career, take action to find opportunities that will provide experience and training to help achieve career goals. For example, if your child is particularly interested in animals, look for opportunities to volunteer at animal shelters, zoos, farms, or veterinary offices. You might also find it helpful to seek out opportunities outside of the child’s particular set of interests to provide your child with new options.
In reality, the steps required to help your autistic child become a successful adult aren’t much different than steps for a non-autistic child, just more intensive and time consuming.
When your child is around the age of 14, begin exploring possible careers, talking to school counselors about your child’s capabilities, participating in job assessment activities, and talking to people or reading books about careers of interest.
In high school, take another look at the transition plan to make sure it is still geared toward your child’s current interests and remains realistic. Your child should begin taking courses that will enable him/her to enter a university or vocational school to pursue a program in his area of interest. Allow your child to participate in activities that allow him/her to “try out” a career field, such as summer jobs, volunteer work, or part-time work. If your child plans to attend college or a vocational program, begin researching potential schools, and tests that are necessary for enrollment. Identify schools that will be able to accommodate your child’s special needs.
After high school, you will need to identify services and benefits your child may be entitled to. Contact local agencies for help in applying for programs or assistance for your child.
28.5 Maturity
During maturity, differences between people with and people without autism are very easily found. Of course this also depends on the severity of autism. It also depends on whether autism has been diagnosed or not. When autism isn’t very predominant, life’s duties can be more or less met. However, it takes a lot more energy from the people helping the autistics and the autistics dealing with it.
Maturity is the phase in one’s life when families are formed and children are born. So this is also the phase where problems with children having autism become visible and might be a reason to look for autism with the parents. This might be perceived as shocking as well as comforting. The perspective the future holds becomes different, as well as the past. This calls for adjustment.
Children with autism are usually not occupied with founding families but with coping to live by themselves. Letting go of your parents is a complicated process which means that parents as well as their children have to explore the new boundaries that come with leaving the nest. Both have the same worries. They worry that this process might go too fast to keep up, or too slow, and they hope that the child might eventually be able to cope on his or her own.
28.6 Middle age
Middle age is typically the phase of life in which people develop their careers. They have finished their studies and are joining the work force. Their qualities and talents become apparent, their experience increases and consequently a career develops. With autistic people this is not the way things usually develop. They are often single and in search of a partner. Sometimes they have already given up seeking a partner. The ones with a partner will often notice that tensions within their relationship are increasing.
During this period, because of the still hesitant and unknown diagnostics of adults with autism, perhaps their autism is still undiscovered. It is often a combination of men with autism and women with an empathetic nature. Women’s middle age also means that women enter the change of life with all the disadvantages of possible mood swings. Their increasing assertiveness is an advantage. For years, women have adjusted themselves to their husbands and asked their children to adapt to their father. Reaching middle age, women sometimes draw the line. They do not wish to sacrifice themselves any more and want their husbands to change and adapt to their desires.
Especially in the case of a male partner with autism, this process is troublesome. Demanding so much change and adaptation is shocking for the man, and the blame over the past years is very painful. For the woman it is shocking to experience that the adjustment of the past years has not been a sacrifice, but a necessity, and that not all can be changed. It takes a lot of effort from both partners to do the relationship justice and continue it with more knowledge and experience.
The loneliness of people with autism without partners increases during this period. The road to old age can get rough. Expectations are readjusted and there is mourning over lost illusions during this period. During midlife crisis, people look back, but for someone with autism this crisis usually occurs later.
28.7 The elderly
When people grow older they tend to look at life based on their self-knowledge and life experience. Because diagnosing an adult with autism (without a mental handicap) only recently has become fashionable, a lot of autistic adults go through life undiagnosed and thus ignorant of the nature of their impairments.
Finding your own identity is the major theme of this life phase. With aging, brain functions become less flexible; this is also the case with autism. This means in effect that their already substandard flexibility even gets worse. They tend to have more problems adjusting behavior and lean heavily on their partner, unless their partner has divorced them or, much more likely, has been found. In their loneliness they can develop into a peculiar character.
Social help during old age is very important. Knowing this aid is available is of utmost importance for people suffering from autism. Where people normally depend on their self-knowledge, people suffering from autism are still busy working on their identity. The diagnosis of autism may even become part of their identity, aggravating their condition after the diagnosis.
Summary:
Previous chapters have outlined the nature of autism, its impact, and possible aids. This chapter focuses on how the various ASDs affect people in each stage of his or her life: babies and toddlers, childhood, puberty/adulthood, maturity, middle age, and old age.
[i] Bijloo, Marijke (2004) Autisme Spectrumstoornissen uit: Niemeijer, M.H., Gastkemper, M., Kamps, F.H.M. Ontwikkelingstoornissen bij kinderen: medisch-pedagogische begeleiding en behandeling. Assen: Koninklijke van Gorcum
[ii] Niemeijer, M.h., Baars, E. (2003) Mensen met autisme beter leren kennen, Louis Bolk Instituut, Driebergen
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