Help after an autism diagnosis...

23 September 2015

Dear friend,

When Big lad was diagnosed with autism I read everything that I could get my hands on, we went on a parents course and I bothered my special needs colleagues by asking lots of questions. Why?

Looking back I think that I was scared. I wanted answers but what I really wanted was some reassurance that everything was going to be alright.

Did I get that? No!!!

What I read:

Autistic children are lonelier than neurotypical children 
Autistic kids have poor quality friendships
Autistic children have trouble reading social cues: figures of speech, facial expressions, hand gestures and body language
Autistic people withdraw
Poor friendships can lead to antisocial behaviour
Autistic kids are ignored or bullied by others
70% of people with autism are unable to live independently.
Autistic children are 28 times more likely to commit suicide

The more I read the more panicked and scared for the future I became.
According to this my son would become a lonely, antisocial person who is bullied, suicidal and unable to live alone...

The information filled me with fear for my child's future and truth be told my own. What hope was there, would he ever be happy?

Most of the initial Dr appointments and therapy sessions did little to alleviate these fears as we spent  our time talking about Big lad's problems. I left the appointments depressed and scared.

If I could go back in time and give myself advice at this worrying stage of my life then what would I say?
  • Don't panic. Don't try and look too far into the future. Plan for your child's immediate and short term needs. It get's easier. 
  • Don't try and do too much at once! Give your child a break. Let them be a child. Yes therapy is important but so is spending time with your family and friends or just relaxing. Big lad really needs his down time. 
  • Build a community of people that will listen. Many parents find it helpful to have therapy themselves. We initially shied away from the psychologists offer of support but later on found it invaluable.
  • Don't drive yourself mad doing research on the internet. Knowledge is power but too much can drive you completely crazy! 
  • Make sure you take time for yourself! Be kind to yourself and your partner. Take care of each other. Hubby and I are each other's tag team. We are honest enough with each other to be able to say, I need a time out.
  • Don't let people tell you what your child can't do. Focus on their capabilities and aim high! Ask health professionals and school to always begin and end on a positive.
  • Don't ask why and certainly don't blame yourself! It is not your fault that your child has autism.
  • Pick your battles! Don't sweat the small stuff. I was going to have perfect children who obeyed my every word (a fact my mum never tires of reminding me). Some things you have to let go, for the sake of your sanity.
  • Recognise and celebrate all achievements and don't measure progress against others. Learn to measure effort and not results.
  • Always focus on your child not on the diagnosis! My big lad is funny, kind, loving, warm and caring and happens to have autism.

In the last 9 years I have learnt that nothing works out as expected. You simply can not predict the future. All you can do is give your child your love and support and let them amaze you with what they can do!

I had to have a shift in my thinking. When I made the realisation that I needed to stop trying to fix my big lad and try harder to understand him our lives became better!

 I strongly believe that we should:

Stop focusing on the disability and focus on the child. See the child before the label.

Shouldn't professionals be giving parents hope? Hope that their child can and will have a happy future.

Sometimes all a parent needs is to know the impossible is actually possible. Hope goes a long way when it comes to autism!

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