7  Just Diagnosed - Next Steps for parents

So your child is just diagnosed with autism.

First, convince yourself of the diagnosis. Take a second opinion or third opinion as necessary. Meet other parents. This is because if you are unsure of the diagnosis, you will be unsure of what to do and that will waste time. Try and understand the rationale for the diagnosis and the recommendations.

Second, recognise that you need help both in terms of expertise about autism and your own emotional health. You are most likely to be someone who does not know about autism. This diagnosis has come as a shock to you. You need help to make sense of it. Find support groups. Seek the help of experts, other parents, counsellors or family members. Remember that your child needs you in good shape.

Then, recognise that the child needs help. A child with autism has a different neurology than you. She may have sensory experiences that are very overwhelming. She might be struggling with social situations, and may have communication problems. While it might be difficult for neurotypical people to imagine these problems and their severity, these difficulties are real. Traditional parenting approaches may actually make it more difficult for the child. Also, every person on the spectrum has slightly different difficulties and experiences life differently. It is important for you as a parent to learn more autism, how it is impacting your child and then help her.

As you go ahead and make further decisions, remember that the objective is to help the child. The child needs help with sensory experiences, social issues and communication, at the very minimum. Every decision you make should be examined in the light of this question - how is this likely to help the child?

Look for more information to make sense of autism and what your child is going through - If you are already on this resource page, you have made a start!

Usually, the recommendation from developmental psychologists is to start therapies. Check the therapy centres around you. Examine their credentials and choose a good therapist. Here is a note on how to choose therapists. Once again, think about their recommendations and how they are going to help your child.

While the therapies and the amount of help your child needs may look overwhelming at first, a lot can be done using common sense. Think of how you can skill yourself up. What can you do at your end? In the Indian context, most institutions that deal with children - preschools, schools, activity centres etc. - do not have much understanding of the needs of children on the spectrum. Remember that you cannot help other people working with the child unless you have a good sense of your child, her difficulties and how to respond to them.

All of this is going to require your time. Plan such that you are able to spend time with the child, interface with therapists and gradually develop an understanding of how to help her manage her daily life.

In summary, take care of yourself, understand your child and continue working. You can do this.

7.1 A few key questions

Here is a short note on a few key questions parents tend to have when their child is diagnosed.

First is a set of questions like what caused my child’s autism, is it my fault etc. This [note] (https://disability.farmhill.in/disability-guides/autism/identification-causes.html#what-causes-autism) talks about causes of autism. Hopefully, it will answer some of your questions and set you on the path of action.

7.1.1 Preschool versus therapies

Another question is about preschool versus therapies. Parents usually think that the child needs to go to preschool. There is a belief that going to school and mingling with other children will help the child learn social and other skills. There is merit to this thought provided the child has the necessary skills and temperament. However, most of the children tend to need therapy help with basic social and communication aspects like greeting others, being around others, pointing to what they want, saying yes or no etc. Many children also tend to have sensory issues around sound, touch, smell, space etc. In such cases, it is a good idea to get help for the child and ensure she is comfortable in the preschool environment. Otherwise, just sending the child to school and bringing her back may not be helpful. Also, going to an environment which she does not feel comfortable in but is compelled to perform one way or the other can have long term negative consequences.

7.1.2 School readiness

Another area where parents tend to be anxious is the school readiness of the child. Most parents believe that going to school is a necessary part of a child’s life. So, when their three year old is diagnosed with autism, one of their goals is to equip the child with basic skills needed to go to a preschool or school. Some of these skills include basic rule following, sitting in one place, playing nicely, being social with other children, etc. Some parents also believe it is important for their children to learn academic skills like reciting the alphabet, a few rhymes etc.

While going to school may help a child acquire a set of necessary skills, children on the spectrum often do not learn by imitating others. They need help with navigating day to day environments due to their sensory and communication challenges. Many children tend to engage in what we think of as inappropriate behaviours - screaming, biting, scratching, just following someone around, watching things go round and round, flapping, constantly humming, zoning out etc. These are all their responses to the difficulties they are facing.

In such a scenario, it is more important to address the child’s primary difficulties and equip her with some basic skills before sending her to an environment like a preschool.

In summary, once again, the answer to whether a child should go to preschool or learn to be school ready depends on the same question - is it good for this child? If the child is able to navigate the environment, then the answer is yes. Else, no.