How To Develop Independence In Children With Autism: Dr Gita Srikanth

In the context of children with autism spectrum disorder (ASD), “outcome” refers to the overall results or achievements in various areas of their development, functioning, and quality of life. It is also about assessing the progress and impact of interventions, treatments, and educational programs on children with autism. The important point to keep in mind is that autism is a really vast spectrum, and the concerns of families may vary as also the skills and learning profile that are different across the spectrum.

Optimal Outcome

Most children may receive a diagnosis of ASD at about age 3. The child is still young and things may not seem that daunting. At least it seems like there is enough time to catch up. The regimen of therapies and inputs begins, as does the journey of schooling, for most children on the spectrum. Spelling out goals and objectives is a dynamic process, which evolves as the child progresses in development and in age. The term “optimal outcome” is used to describe therapy goals. In the context of ASD and interventions for the condition, optimal outcome means the best possible outcome for the individual, given his/her history, personal characteristics, quality and quantity of intervention, and available resources.

Then there is the concept of Quality of Life (QoL), which includes physical health, food, residential facilities, social relationships, and the identity of self. QoL is influenced not only by the quality of intervention but also by factors such as the socioeconomic status of the family, the ability of the parents to seamlessly adapt to the needs of the child, parental emotional health, and the presence of comorbid conditions in the child (at least 37% of individuals with ASD have an additional diagnosis). These are two critical concepts that can guide the process of empowering children to lead a meaningful life.

In India, however, the choice of therapies and the expected outcomes are driven by social approval and norms. And this puts a lot of pressure on families to make educational and intervention choices for their autistic child that may not necessarily be relevant to him/her at a given point.

Parental Expectations: Independence

Most families sum up their expectations for the child in one word: Independence. And as a term, independence is defined by parents broadly to include taking care of oneself and one’s own needs, and the ability to be happy, the last feature being emotional well-being.

Parents often describe “independence” in the context of ASD as being independent of parental supervision and monitoring, or as financial independence, meaning the individual should be earning and be productively engaged, or should know how to handle finances at least. But when it comes to children with autism, independence is best defined by the term “adaptive functioning,” which includes Daily Living Skills (DLS) such as shopping, food preparation, navigation and logistics, self-care and hygiene, communication skills, including expression of needs, and social skills (e.g., emotional regulation, turn-taking, expression and recognition of emotions, and interpersonal skills).

Adaptive functioning is what enables the individual to function independently in the community and at home. A large part of QoL is emotional well-being, which includes relationships, personal development, physical and mental health, recreation and leisure skills, and social inclusion. If the individual can take the initiative and learn these skills, then he/she is well on his/her way to leading a meaningful life.

How To Inculcate DLS, And Where To Start?

Parents (and teachers) need to ensure that the child has inculcated:

1. Adaptive skills
2. Socially acceptable behavior at home and in the community
3. Play and leisure skills

There is one other big goal to be achieved through intervention and that is communication beyond basic needs, which enables the individual to live and function independently, and seek help when needed.

Let’s take a closer look at these three skills.

1. ADAPTIVE SKILLS

This is when we are looking at adaptive behaviors and not just skill building as the completion of a series of steps. Let’s look at a couple of simple examples to illustrate this.

What are the skills that we usually forget to address when teaching a child with autism to shop?

While a parent/teacher may analyze a task such as shopping and focus on teaching how to help the child find the items he/she wants, how to pay money, how to calculate the change he/she should get back and so on, there is a lot more that the child needs to learn, before he/she can actually complete the simple task of shopping truly independently. Here is a list of skills you need to help your child learn:

• Find the wallet
• Ensure that there is sufficient cash to cover the shopping list
• Transport to get to the store
• Safety on the road, if walking
• How to ask for or find suitable substitutes when some items on the list are not available at the store
• How to find a salesperson for help, if needed
• Navigating the presence of people who may be in the same aisle as he/she is
• Wait for his/her turn for billing appropriately
• Get home and put away the purchased items in the right place

What about the child who has the skills to bathe, brush his/her teeth, change clothes, but needs a parent to stand near him/her to prompt or to remind him/her of the next step?

Many parents say that the child is independent in that he/she has the skills to complete the tasks, but will find shortcuts if unsupervised, not do a “good enough” job, or sometimes skip steps. Working on adaptive skills to independence means making the child capable of self-managing his/her chores through a systematic process of teaching, reinforcing, and gradually sequencing the steps together to help the child complete the task with minimum need for another person’s presence.

2. SOCIALLY ACCEPTABLE BEHAVIOR AT HOME AND IN THE COMMUNITY

This is again a vast topic, and as parents (and teachers) we need to look beyond the obvious and overrated skills of always greeting and responding to people. The skills listed below are the ones that are hard to teach but will help the child be socially functional and feel included:

• The concept of public and private spaces
• Friendships—who is a friend/a close friend/an acquaintance
• Modulating tone of voice and decibel levels depending on the space
• Knowing what information can be shared, with whom, and where
• Maintaining socially appropriate physical distances
• Knowing limits of intrusiveness in texting people or asking personal questions
• Knowing how much eye contact is acceptable, when to look away and not stare at another person
• Knowing how to be flexible with changes and rules
• Knowing how to deal with emotions in an acceptable manner

3. PLAY AND LEISURE SKILLS

The other big area of focus is play and leisure. While many parents do not see the need to spend precious time on these skills, they go a long way in giving the child access to more social interactions and reinforcements, such as being able to play with his/her peers. In the long run, leisure skills will give the adult with ASD a means to engage himself/herself when he/she is bored, a means to relax, and a means to be a part of a community with similar interests and pursuits.

Things To Remember As A Parent

The process of empowering the child with ASD starts with the parent. As discussed in the April issue, self-care and self-compassion will certainly help the parent walk this journey of autism. But beyond that, it is important to keep in mind the child’s needs. Again, as discussed earlier, walking alongside the child and being sensitive and compassionate to his/her needs is critical for the child to blossom and grow. Some things to keep reminding yourself as a parent of a child with ASD:

• Let the needs of the child guide your choices.
• Look at education as empowerment of the child; it is not about exams and certificates.
• Some skills are essential for living. Build on those skills by age 8.
• Some skills and activities are nonnegotiable while some others can wait. Always prioritize with the long-term objectives in mind.
• Consciously work on giving the child real-life skills and exposure, to build independent living skills.
• Consciously build an informal support system of friends, family and service providers.

Creating Financial Security For Your Child

Studies indicate that only 20% of adults in the autism spectrum live independently and only about 33% are employed—and these are not numbers from India. Given these statistics, it becomes imperative for Indian families to understand and internalize that most children on the spectrum may never find employment or hold down a job, or earn enough to self-sustain. It is critical for families to accept this truth and start planning well in advance, so the child is left with enough financial security. And remember, there is a lifetime ahead, so one particular interest or skill may not make the cut—the child needs a bouquet of interests and skills to keep him/her going, and this is a process that will keep evolving with time.

Fortunately, there are many support groups, there is a load of information available online, there are people willing to share their experiences. While these are great sources of information and solace, remember that every child is different, every family’s needs are different, and the onus is on parents to evaluate and make choices that might be relevant to them and, more importantly, to the child. It is not about getting past today, but it is about the long run, about empowering the child for life, and about his/her happiness and quality of life.