Things I wish someone had told me when my son was diagnosed with Autism

By Alive & Well

When my son was first diagnosed, I felt lost and lonely for a long time. My beautiful, capable son had a big, fat, juicy label, one that people might use to judge him.

I racked my brain, trawled the Internet and read book after book, trying to educate myself and learn as much as I could. I went through thousands of family photos and videos, looking for the moment when he stopped reaching his milestones. I worried incessantly. I worked myself up. I became a sleepless zombie. I thought “if everyone could just help a bit, everything will be fine,” but I didn’t know what to ask for or where to start.

Part of my journey? Absolutely.

Helpful? Not so much.

Three years later, I would love to go back and tell myself some of the things I know now. I know what I would say. And it’s the advice I would give anyone whose child has been given a similar diagnosis.

1. Look after yourself – physically, mentally, spiritually

  • Surround yourself with people you can rely on. You don’t need to manage alone. If you have a partner, communicate well and become a strong team – use this opportunity to bring out the best in each other.
  • If you’re a full-time mum or dad, encourage yourself to have time away from the day-to-day activities of the household. You will need it.
  • Nourish yourself with health-giving wholefoods and water. Avoid empty non-foods like sugar and fast food, which are an energy drain on your body.
  • Ensure you give yourself adequate time to rest – sleep is hugely restorative. Know how much is good for you and make sure you get it.
  • Become more self-aware and recognise when you are tiring. It’s usually when you feel particularly resentful, snippy or unlucky. These are the times to ask for help from a supportive relative or friend, and/or to speak to a trusted professional.
  • Make time to follow your spiritual path, whether this is through surfing, prayer, meditation or sitting on a mountain – whatever brings a sense of peace and space to your life.

Credit: hinnamsaisuyI know all of this is easier said than done, but it is worth the effort. It is tempting to stay up all night searching for that miracle approach that will help your child overnight – but if there was one, we would all know about it, I promise.

Your child is capable of learning and growing like any other. He or she may even ‘recover’ (whatever that means … but I’ll save that for another post!), but it will be a marathon, not a sprint. At the same time, it doesn’t have to be a marathon in the gruelling, exhausting sense, but rather in the sense of an explorer charting new territories.

Get yourself in the best possible position to go the distance, and you can – believe it or not – have some fun as you go.

2. Take care of your child’s physical and neurological health

For something like Autism, it’s important to recognise that the whole body is involved, not just the brain, and that the two are inextricably linked. This used to be ‘fringe’ thinking – just like neuroplasticity once was – so your paediatrician might not yet be across the latest information on it, but it is now well documented and we have seen the evidence for ourselves. There is a clear link between physical health and the severity of symptoms in many kids, so addressing this area can help enormously.

The most common disorders that children with Autism can experience, according to research[1] published in Neurotherapeutics last year, are seizures, sleep disorders, gastrointestinal issues, metabolic disorders and hormonal dysfunction.

As my son’s health declined, he withdrew further and further until he was a grey, scared, haunted-looking boy. It was a subtle and slow process for him. It happened bit by bit. But then suddenly, when he could no longer leave his bedroom without feeling completely overwhelmed, it was obvious.

It only took 4 weeks of careful eating and targeted supplementation for our son to venture into our back garden again (by that point, it had been 6 months since the last time). With support, his health has continued to improve and it has been onwards and upwards ever since.

For practical information about healing your child’s physical health, see the MINDD website (Aus) or world Autism nutrition expert Julie Matthews’ site Nourishing Hope. These are just two of the many helpful resources out there that can get you started.

We use HANDLE for neurological development (ie. making new brain connections or unscrambling confused ones) with great success, which I wrote about in this post. This really helped my son’s sensory integration issues and eye contact. Some other parents I know have had success with techniques like Brain Balance (US) and Brain Gym (Aus).

I am a big fan of a gentle approach with this brain stuff. It is powerful and can bring about big shifts in ability.

3. Find an approach to helping your child’s social challenges that feels good to YOU

At the heart of Autism is a social connection challenge. However, every child is different. Only you can decide what would be best for your child, with the particular challenges he or she is facing. Only you can put the pieces of the jigsaw together. Be your own expert and trust your instincts. And, again, if you have a partner (or sister or parent) helping you, talk it over with them and use both of your brains to come up with ideas. Be a team and make sure you’re on the same wavelength for the big decisions.

Kyle’s Treehouse is a fantastic website that details a range of approaches you can take. It was put together by a wonderful Son-Rise mum/mom.

As it happens, Son-Rise is one of the ways we’re helping our son at the moment, and we love it (I posted a bit about it here). We wanted to connect with our son deeply and fully, and this approach is all about that. It is good for our son and great for us. But who knows what we’ll be doing in 5 years? I don’t. For now, this works, is really enjoyable and engaging, and helps us be the best we can be. Which leads me to my final point …

4. Live in the moment

Have to say, this is hilarious coming from me. I was one of the most organised, organising people I know – and I still am sometimes.

But I am evolving!  The past is gone. The future unknown. It is the ‘futurising’ that kills me. Every. Single. Time.

It has taken a while, but I have learnt this now. I can only address what happens now, through the choices I make and how I decide to ‘show up’ in the moment.

When the psychologist diagnosed my son, I remember saying, with tears in my eyes, “I just want everyone to love him as much as I do.” Whenever I have periods of anxiety, it is always about his future. But I have learnt that this fear does not help my son, or me. Staying in the present and relishing every experience with love and curiosity not only helps me ‘get by,’ it shows me the gifts of the experience and lets me have a lot of fun along the way.

What approaches have you found helpful? How do you support yourself?

[1] Bauman ML, 2010, Medical comorbidities in Autism: Challenges to Diagnosis and Treatment, Neurotherapeutics, Jul; 7 (3): 320-327.