What have I learnt about Autism in this journey with my son Adi

Some tips based on our journey (Sermons with the advantage of grey hair)

Read and understand Autism.

Till you understand what autism is, you will not be able to think from the perspective of the kid. I took three months off and tried to read and understand autism. I would have read almost over 100 books and whatever was in the net 10 years ago within my timeframe and understanding to get the perspective. I still have scratched the surface only.

Get it straight AUTISM IS INCURABLE AND LIFELONG.

Let us not beat around the bush. The keyword is PERVASIVE Development Disorder. However, with interventions and therapies, and a bit of luck, there can be substantial improvements. Do not look for miracle solutions

Try to be open about the disability of the kid.

At least 50% of the parents try to hide the disability from relatives and friends, Apart from insulting their intelligence (they can make out the oddities even if they know nothing about Autism come on), you are doing a disservice to the kid. And how long can you hide it (The temptation to hide it is more in ASD due to the looks)

Don’t do therapist hopping like Pandal hopping during Puja.

It is bound to tire you and the kid to no end. Try to choose a therapist nearby (In Delhi or any big city it takes more than an hour normally) as the kid is too fagged out to learn from the therapist after a long journey. Choose a therapist with whom the kid has a good rapport. The therapist need not be the best in the city necessarily, rapport is the key.

THE BEST THERAPIST CAN BE THE MOTHER. ONCE YOU HAVE PROPER RESOURCES AND YOU ARE PREPARED TO WORK WITH THE KID SANS THE CAREER/JOB/KITTY PARTIES/SOCIAL CIRCUIT.

(Whether you like it or not, one of the parents, normally the mother has to compromise the career/job and the social life. This is imperative in the initial years at least. After that initial two/ three year vanvas, earmark some time leisure time for yourself- unluckily I have seen this cycle reversed in the majority of the cases). I give 90% of the credit to my wife for the progress of my kid, who unflinchingly quit the job and works with him non-stop 24X7X365 (I just lend the moral support and do the easier armchair internet part). We have not kept a maid (save the jhaddo and bartan) as we cannot afford it (and I guess ironically we are better off)

It is imperative to move to AAC if the kid is non-verbal

Despite the best efforts of parents and therapists around 50% of kids with Autism remain non-verbal lifelong. It is a myth and a mistake to try AAC only after verbal efforts fail (by the time it is a bit late at times with a terrible price to pay). By the way, 70% of adult communication in the NT world is non-verbal (mainly body language and tone rather than language per se). Aggression and self-aggression are mainly due to the kid being unable to communicate. AAC again.

Please focus on Activities of daily living (ADL) first before moving to academics or other skills.

Toilet training is far more important than say phonetics. Cooking is far more important than say Multiplication tables. Try to make them as independent as possible in day to day living skills

Please get another fact straight as I outlined in a recent post. The improvement is dependent on the ability of the kid. ( I stick to my guns that the Autism movement has been hijacked by Aspies and the kids at the higher end of the spectrum). Life is difficult both for the kid and the parent if expectations and unrealistic. Comparisons are odious as each kid in the spectrum is a different dot in the spectrum akin to stars in a milky way (not just a google rainbow).

Some parents may not like it, but I will fail in my duty if I do not point this out. There is an informal caste system in the disabilities sector, with many parents with Autism feeling that Autism is higher in the social pecking order compared to say IC (Intellectually challenged or MR as referred to earlier) or CP or Downs. Nothing could be further from the truth. Even for the high functioning fellows, the social impediments make them at times perform lower than the others in the disabilities spectrum. This gets hidden away due to their deceptive looks, as Autism does not normally have any obvious facial deformity. Consider that say a mild/moderate IC adult is able to find employment and mild autism or Asperger struggles with to find or keep a job even in the USA with the best of facilities). So please shed this superiority complex (if you have one) and let us not have this pecking order (if it is there in your mind or subconscious). Autism is no better (or no worse) than any of the other neurological disabilities. And I have not seen parents with other disabilities run around for miracle cures (though they also run around for the best possible interventions). Let us work on a common disability platform rather than silos.

Many persons (alas including some experts) feel that only Aspergers are capable of giving love and other kids in the spectrum are incapable of forming lasting relationships and want people/parents only for their needs. THIS IS ONE OF THE BIGGEST MYTHS ABOUT AUTISM, PLEASE GET IT OUT OF YOUR HEAD. Only the way they express it is different, and they do it with less frequency than the NT tribe – though the NT tribe at times fakes it. Having said that, if you treat them as an object (or indeed treat the wife as an object) you are bound to get back what you give

Acceptance is the key. Accept your kid with all his/her quirks, and respect his/her disability. Of course, acceptance does not mean blind acceptance and leaving it to God, and that is why this group is for resource and experience sharing. We got to try our best, having brought our kids to this world. The agenda has to be to help our kids lead a good quality of life with as much happiness as we can pack in.

I am sorry if I have inadvertently or unintentionally ruffled some feathers or hurt some people. But am entitled to my views. My fellow parents can take whatever they feel is correct out of these experiences and confine the rest to the bin.