The early days of autism…….post diagnosis.

I don’t quite know why but whenever Touristo and I are out and about at a park we attract people who have developmental concerns about their kids.  Maybe it’s because people get the feeling that I am going to be quite open about our story, or maybe it is just because once you watch Touristo for a few minutes it becomes obvious that he does have developmental differences that they can relate to.  I think people are pretty disconnected these days and are looking for someone to talk to.

Because of these recent experiences, this week’s post has been inspired by a few people that I have spoken to in the last few weeks who have recently had a child diagnosed with autism, are looking into diagnosis or want to know how to support someone whose family is going through this process. So I just want to run through a few thoughts I have about this stage in our ‘journey’ (I freaking hate this word used this way, but it’s really very apt).

“There is nothing wrong with my child, but I do have concerns about x, y and z”
“There is only one thing I can give you a guarantee on and that is, there IS NOTHING wrong with your child.  He/she has been created in exactly the way they were meant to be.  If you have those concerns, they may be wired differently and it is very worthwhile investigating even if it’s just a niggling feeling because they may benefit from various accommodations, adaptations and assistance.  Also, if they are autistic or have any developmental difference, knowing about it will empower you and give you the tools to understand how best to connect, communicate and accommodate your child.”

People’s variations on ‘the doom’ of diagnosis
I have written previously about how I think that in the field of autism, right from the onset, parents are given a really bleak view of what their child’s life and development will be like.  When you look at the description of autism is in the DSM-5 it is this horrible list of impairments, so parents read this and think “shit, this is my beautiful child’s life”.  This is something that really grinds my gears, and I think when any professional is speaking to the parents of a newly diagnosed child they need to be careful to paint a more accurate and positive picture of what autism is.  Parents need to know that whilst autism can present challenges, it can also have great beauty to it with some autistic characterics being unfailing honesty, authenticity, deep sensitivity and a strong sense of social justice. Some autistic people also have exceptional ability in certain fields, or the ability to turn areas of fascination into productive outcomes.  Additionally, perseverating in autism is seen as a big, fat negative, but I have always found it to be particularly useful in my current field of work.  Not many people can stay on a topic for as long as me when I am fascinated!

“Ahhhhhhhh what sort of future are they going to have”
Before Touristo was diagnosed, I had this very rigid idea of what success in life looked like.  I had this idea that I would send my kids to a good school, they would get into a good university, get a good graduate role, make decent coin and then one day have their own family.  Now this may all be still completely possible but Touristo’s unknown future forced me to really consider what a successful life consists of and I have to say, I was so wrong.  I have not been more wrong about anything in my life.  Looking back this idea is so arrogant and so elitist, and was full of me projecting what I determine success to be.

When you really sit down and consider what a successful life is, there is only one thing that is really important and that is happiness, and there are infinite paths on how to get to there.  There are so many different variations on how one can lead a fulfilling and meaningful life, and who determines what meaningful is anyhow?  I am now at the point where I still wonder what the future holds for Touristo but only in the same way that I wonder about the Princess’s future.  I know that they are both loved, supported and will have the opportunity to have meaningful and happy lives.  This may be independently, or maybe not……either way, doesn’t really matter.

“We have to start every single sort of Early Intervention right now to ‘close the gap'”
I know this is difficult because you are scared.  I have been there.  You have been scared by the autism field into believing that your child needs 40 hours a week of intensive therapy ‘to make them normal’, or so they can ‘mask their autism’.   But just stop and take a breather.  No matter what therapy you do, they will always be autistic and being autistic is just as valid as being neurotypical.  Accepting this is very liberating.  For the record, I think therapy can be great in helping kids realise their potential, and I think it is even more valuable for upskilling parents so that they feel confident and capable in assisting their kids at home and making every interaction a learning opportunity.  But there is a middle ground and children still need opportunity to enjoy being a kid.

One last, but probably most important thought.  The day before your kid was diagnosed you probably thought that they were the most perfect creature on earth.  Your finest creation.  When you come out from that diagnostic appointment, absolutely nothing has changed with your child.  Not a thing.  The only thing that has changed is your mindset.

*Note – this is all purely my opinion, but it is all stuff that I wish someone had of said to me years ago.  Maybe it would have helped, maybe at the time I wasn’t in the mindset to hear it – who knows.  I just want to provoke a little thought.

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4 thoughts on “The early days of autism…….post diagnosis.

  1. I completely agree with this post. No child needs 40 hours a week of intervention. Period. There may be some areas on which they need help, yes, but they also need time to be a kid. At this stage in the game, my teen goes to school, works hard, comes home and hangs with me or a PCA and does typical things that teens do to recharge. He plays with his Ipad, listens to music, goes to the pool, or plays on his swing. Adding more therapy onto an 8 hour school day would be cruel and unusual. Kids need time to be kids!

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    • Thank you! Absolutely. I also think that if they are in a well-supported educational setting, they will be learning the skills that they need from this during their time at school. My little matey is busted after pre-school. He usually takes himself and his iPad to his bedroom for at least 30 minutes when he get home to decompress. I absolutely think it’s a need after people-ing all day and desperately trying to be the person everyone expects him to be. Exhausting!

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