William Shakespeare writes in his monologue from As You Like It – “And one man in his time plays many parts. His acts being seven stages”. As children pass through the different stages of life new needs and challenges arise. Typically growing people can cope with these odds with no significant distress. However the transitions can be like a battle for someone with autism. Children with autism typically dislike change.
Even a slight amount of change in their routine, plan and/or expectation can freak them out. You can imagine how difficult it would be for them to cope with the transition to the teenage or adolescence.
Autism Spectrum comprises of individuals with a range of signs and symptoms. The required level of professional services, parental support and the outcome of intervention depends on the complexity of the condition. Irrespective of the symptoms, ages and stages are the guiding factors for intervention. For a 7 years old child, to be able to learn how to put on a T shirt can be the priority. However for a 16 years old teenager it would be more important to pick a trendy pair of jeans and colour match it with the top.
I have no doubt in stating that we Indians nurture our children to the best of our capacities. We foster them with utmost care and never get tired of doing that extra mile for them. I have come across a few families who sold their assets and even the family business in one case to access the expensive health and disability services. In our society it is ok for children to be dependent on their parents for day to day tasks. For example, it is quite acceptable for a 7 years old being finger fed by the mother.
This level of care is fantastic and unique to our rich culture. However it has a downside too. There is a very fine line between caring and being over protective. As parents we can unknowingly tip to the other side. While offering wonderful care can facilitate development, over protectiveness can deprive our children from getting the opportunities to develop independent daily living skills. Typically growing children may not get much affected by this. As they step into the teenage they start growing their own wings and finally fly into the independence of adulthood. However the story may not be the same for children with autism. These children might struggle to meet the new demands and struggle to catch up with their typically developing peers.
It is not uncommon for them to get tuned to be dependent and believe me once this happens; it is difficult to wean them out of the shell of dependency. Things may not happen automatically. For example, a 15 years old child with autism may not automatically learn that it is not ok to ask mom to feed him at restaurants or it is not acceptable to use the toilet without shutting the door.
It pays to prepare children with autism for the next stage of life well in advance. In saying that I do not mean that you should stop giving the parental love, care and assistance to your child. It is more about giving the just right level of assistance and strategically taking your hands off to boost their independence. It is similar to how we all might have learnt riding a bicycle. Your child should get a message that it is ok to make mistakes, have a few falls, get hurt and eventually we learn to do things. The technique of “supervised neglect” works well with these children. This implies that you are not overly helping but at the same time ensuring things are going smooth and safe. I would like to discuss these further under the subsequent subheadings.
Changes in the body: As children hit puberty a number of bodily changes take place. All teenagers have to cope with the growth and seeing their bodies change. It is important to prepare these children for the changes to their body before they actually begin puberty. I understand that this task can be very challenging for the parents, especially in the Indian context. In our culture we rarely have an open discussion around these issues. It is expected that children would learn these secret stuff on their own. Well, this may be possible in a typically growing child. However a child with autism needs to be introduced to these changes. This can be done by involving them in activities like identifying basic body changes of puberty: increased height and weight, hair growth, breast development, penis growth, body odour etc. The goals should be made around the age appropriate needs. For example, children can learn to spray deodorant, to shave the face, to tolerate wearing a bra. Girls should be given education around periods and the related tasks like changing pads.
Modesty: Modesty becomes an important issue as children grow older and their bodies begin to mature. Children with autism may not understand the significance of their body changes and why they need to be clothed. They may need to be taught the specific concepts like what does being naked mean, when it is ok to be naked (e.g. in my bathroom) and when it is not ok. The concept of privacy needs to be introduced. For example, my private areas belong to me, no one should see these.
Personal space and touch: Like any typically growing child, children with autism can be at the risk of being taken advantage of. Autism makes them misread or totally miss the social cues which in turn make them more vulnerable. They might find it difficult to judge the appropriateness of personal space and touch. The intervention should be directed towards helping the child identify appropriate and inappropriate touch. For example, it is ok for people to hand shake but it is not ok for people to touch your private areas. These children hold on to the literal meaning which can make them inflexible. Hence it is important to make them aware of the exceptions too. For example, it is ok for the doctor to examine my private areas when my parents are around.
Using strategies like maintaining social distance- an elbow’s width sitting next to someone and an arm’s length if he is standing in front of you are two simple measures you can teach your child to ensure the appropriate personal space. The social stories work well to teach things around body change, modesty, personal space and touch. Visuals like picture cards can be utilized whenever needed.
Motor coordination: Children with additional motor coordination related issues may need help in learning new tasks like doing make-up, making hair, shaving, wearing glasses/ contact lenses and feet hygiene. Learning to drive can be a challenge for them. They should be given ample time to master these skills by breaking the tasks into small achievable steps. Practice helps to increase the speed and accuracy of the performance. Sometimes the tasks can be adapted to suit their needs. For example, using an electric razor instead of the manual one, using a good magnifying mirror in a good light source can make it simpler what to do during make-up.
Branching out: As children grow into their teens they develop the natural instinct of being more independent. They may like to go out and explore things on their own. This should be encouraged with the right level of support. They would need help around learning time management skills. Your child can carry a checklist or scheduler to remember the tasks. You can strategically promote independence by making the child help you in daily chores like making a toast, operating the washing machine, planning the birthday party. You can teach him/ her how to use an ATM and how to swipe a card for shopping. This is going to be an expensive affair, isn’t? The functional skills like catching a bus, ordering a meal at a restaurant can be helpful. You can think many other activities which is relevant to your context.
Socialisation: Children with autism find social situations challenging. As they grow older they are expected to be more participative in situations like a family get together, a marriage function. You can teach your child how to initiate and carry on a back and forth conversation. Your child needs to know how and when to end the conversation as well. There are various activities which can be helpful in learning social skills. For example, look out for pictures, stories in magazines, on the television and discuss them with the child. How would you feel in that situation, and what does it make him feel? It is important to keep to keep in mind that social difficulties may get masked by learned strategies. For example, teenage girl with high functioning autism may learn to give social smile and eye contact. However she may get exhausted and stressed of consciously trying to exhibit these social skills which she is not naturally good at. Hence it is important to offer the quiet “me time” to your child at regular intervals to deload the stress. During this time the child can engage in self calming sensory strategies like listening to the favourite music. The Secret Agent Society (SAS) programme can be helpful for high functioning children.
Please keep in mind that some of the behaviours are typical to the developmental stage. Frankly speaking we often do the mistake of relating all the existing behaviours with the given diagnoses. Your child is a child first and he/she will do many things which you expect from any child of that age. Shakespeare talked about the seven stages of life. Every stage is equally beautiful. So please do not stress too much if your teenaged child starts developing a taste for a loud band, sports a low waist trousers or gels spikes. Just sit back on the couch with a coffee, have a few deep breaths and enjoy your loved one growing.
About the author:
Harsh Vardhan (NZROT, APC) is a Paediatric Occupational Therapist. He works as an advanced clinician for the public funded health service of New Zealand. He also manages his private practice. He is an Accredited Equipment and Modification Service Assessor for the Ministry of Health NZ. He is specialised in autism and passionate about the empowerment of the children and their families. Time to time he conducts online clinics, workshops, seminars on autism in India.