I remember sitting in a doctor’s office in Hyderabad, waiting for a doctor’s appointment with a paediatrician. Sitting right next to me was a couple with twins. One child was on the autism spectrum, clear to me only because I was a special educator. The fact that one child was a twin meant that parents figured out sooner rather than later of differences in development.
The mother wanted answers, she knew though. It was a look in her eyes, looking around at others while keeping her children firmly in sight. It wasn’t my responsibility to diagnose but I did tell her that all differences could be worked with, that early intervention works and that she wasn’t alone. Sitting to write this article, I can’t help thinking of her, wondering where she is now and how her children are doing.
If one were to guess her trajectory, based on the many competent, driven and engaged parents of those with different life needs I get to see around me, she is definitely an expert on her child by now and can probably talk to a medical professional in their lingo, in terms of research evidence, sample size and journal papers. Her hope for her child, which initially dimmed, will be likely burning high and strong: 'Why not my child and how can I get him there?'
Being handed a diagnosis of autism can shake the steadiest of nerves. We hope the diagnosis was given to parents sensitively. We hope they get some direction on the next step in their cities appropriately. This article gives some general information and the promise of more, to the level we can manage it.
What would a parent need to know after an autism diagnosis? Like everything else, this is categorized as a mindset/approach first and practicalities/procedures next.
Autism isn’t a death sentence, not even close
Many famous people had autism powering their achievements. Be it a Henry Cavendish discovering hydrogen and oxygen or an Emily Dickinson making us stop and think with her powerful poetry, autism isn’t a disability. You will make the journey over a period of time to see it for its strengths as well as difficulties.
Reach out and speak up
Yes, there are very real difficulties, it does require a steep learning curve on a subject parents are usually experts on- their children. For every problem though, there is a warrior parent ahead who has forged a path. The community of different-needs parenting is also very welcoming and inclusive. There are entire families who will open up to help you, sight unseen sometimes, email/phone calls, you name it.
Please don’t keep it quiet, there is nothing wrong with our children: development is a path that veers off differently and sometimes we are at the center, many times on the shoulder, holding on through the potholes. If you reach out, you will get help. If you don’t, you will kick yourself later on, because speaking up and out ends happening anyways. There is a community out there: of parents, special educators and caring adults. You are not alone.
Acceptance is a process
There is a proven five-stage process to life events that starts with denial, goes to anger and bargaining and reaches acceptance through depression as a way station. No one is immune to it, this is a process we all go through several times in life for several issues. Sometimes it is in a child’s infancy, maybe to accept that your child will call you Amma in his/her own time. It goes on through life, different causes at different times but easier every time with repetition.
Early intervention is critical
Catching difficulties early helps a lot because we can help out a bit more when we catch a developing system closer to the beginning. As a child grows, their history and experiences add an additional layer and when they can’t tell us what they are feeling or experiencing, the levels of complexity increase.
Many parents, even those who get an early diagnosis, get caught up in the process of acceptance mentioned above. Many want to believe family members (even paediatricians) who ask them to wait, that development will happen. Yes, it will but when we need to give it that boosting hand because of a differently wired brain, it won’t happen without our help.
If it helps to know that grief to acceptance is a process, do try to work with your child even when you are in the middle of it. This is a hard ask of anyone but parents of kids on the autism spectrum are very close to salvation in my book. If one believes that the soul is reincarnated less and less as it learns more and more, this is likely the last reincarnation for these parents. In the meantime, early intervention is the mantra.
There is no fix
Many parents start out trying to ‘fix’ it. This is a natural reaction given the love and hopes parents have for their kids in terms of a future, of happiness and independence. The hard part of an autism diagnosis is that there is no fix. There are several therapies that help, several strategies we can train ourselves and them on, several accommodations we can make once we understand needs. You will hear of tales of parents who have recovered their children from autism. I even know of a few parents personally. This is still no fix, it is infinitely better because these parents worked out of their skins to understand, accept and make it happen for themselves and their children.
Presume competence always
There are children with autism who drive, who work in IT companies, who have devised gadgets and changed the world, sportsmen and women, artists, researchers and scientists. There is a Temple Grandin who taught, wrote books, devised humane ways in agricultural practices and had movies made of her. There are talk show hosts, college graduates, singers who remember and sing exactly like the original. They exist and do so because their parents didn’t think they could do less because of autism.
When children are not able to communicate verbally, parents got them other means. When there were behaviour issues, they investigated like detectives to figure it out. They found professionals and learned themselves. Always assuming that their child could and would…
You are the expert on your child. Getting some expertise on the ‘technical’ aspects such as analyzing and managing behaviour, understanding sensory needs, learning autism as the condition it is, etc. would help tremendously. While there are professionals, it is hard to get guidance on each and every issue and on a timely basis. If parents qualify to become special educators or other related professionals would be ideal: not only does their child benefit, as a country we benefit with committed professionals. If that is not an option, reading all kinds of accounts is possible and helpful as is talking to parents who have tried many ways. Parent support groups help tremendously and are available online. A recommended reading list (a starter) is here.
Different therapies will work differently, each one helping with something
Just like there is no fix, there isn’t one therapy that is THE way. For some, it might be Applied Behaviour Analysis or ABA (offering a tangible reward for a specific behaviour. Help in moderating or changing behaviour through this method.) and for others it might be Rapid Prompting Method (provide cues to an autistic child through typing, pointing or writing. Known to provide results in speaking and writing). Each methodology has its advocates and everything will probably work to some extent for most children. In my experience and as shared by parents, every therapy they have tried has had some impact. The caution is that there are cons in this as in everything else – the fact that our child has autism doesn’t mean we need to resort to methods with little evidence behind them on effectiveness. Please research your options, talk to parents through your networks, look for evidence before trying anything. Old faithfuls are speech therapy, occupational therapy (the therapeutic use of daily activities to help children participate in school and social activities) and special education ( Special education refers to a range of educational and social services provided by the public school system and other educational institutions to individuals with disabilities who are between three and 21 years of age. Source: http://www.healthofchildren.com).
Emphasize your child’s strengths/interests
All children have strengths. Many have strengths that can become a strong career/livelihood. These may be academic: memory, calculation, etc. or splinter interests (skills that are a subset of meaningful skills and may not have real-world value) like the arts, music, sports, jewellery design, etc. Stims (self-stimulatory behaviour which can include repeated movements or sounds) can be (and have been) converted to skills. A parent I know used her son’s hand stims to bounce a basketball and used that to build gross motor skills. It takes creativity and necessity is the mother of the parent of a child with autism as well!
Self care, self care, self care
Whatever it takes to keep yourself positive and capable of taking all these calls, doing what it takes is priority too. For some it is a career they have worked hard to get to, for others it might be speech session to occupational therapy session: there is really no one answer, no judgment whatsoever. If people think you need to dedicate your entire soul to your child, it is their problem. You are a person too and need to figure out your ways to decompress and take them without guilt.
Keep expectations high enough
Yes, the children we parent/work with have different needs. That does not mean that our expectations of them need to be set low. We continue to aim for independence. If a child can handle academics, we try for as long as we realistically can. Many children on the autism spectrum have college degrees: vocational training is not a given, functional academics is not the only end goal.
I am not advocating pressure here or a traditional academic mindset of getting that last mark and make it a 100! Yes, at a certain point, one might need to take a call on academics based on individual factors but the overall picture does not have to automatically be decided at birth or with a diagnosis. A diagnosis is a starting point, something that helps us understand enough to work with a child and not a prognosis of where they will go.
Our children continue to surprise us, with and without autism.
Bio: Sangitha Krishnamurthi is a special educator, passionate about children, books and inclusion. She consults with several schools as well as works with children on the autism spectrum one on one. She co-founded The Teachers Collective with a couple of teacher-friends, conducting several hands-on, fun workshops.