Embracing a diagnosis of Autism in a child - 6 lovely and helpful things to know...
To acknowledge World Autism (and Acceptance!) Day on 2nd April 2018, we interviewed a local Mum about her experience of discovering her child was Autistic and what she wishes she would have known.
Our lovely mum that we interviewed wishes to remain anonymous to protect her child's identity but she was delighted to share her experience and learnings in the hope of supporting other parents...
Around 1 in 100 children in Australia are Autistic (although the actual figures of Autistic people in the community are much higher due to a lack of diagnosis in older generations)
Nonetheless, public understanding and societal acceptance of Autism is often limited. Ignorant stereotypes are often used to represent Autistic people and Autism is frequently inaccurately represented in the media. As a result, parents who are worried their children might be autistic often feel isolated and fearful of what a diagnosis for their child might mean.
I know exactly how that feels. My son was diagnosed 2 years ago at just under 3 years, and at the time, we had no understanding of Autism in our family. April 2nd is World Autism Awareness (and Acceptance!) day and as such, I wanted to reach out to local parents with young children who might be wondering whether their child is autistic, and share 6 things I wish I knew when our family was in your position:
1. If you have questions, concerns or a gut feeling about your child's behaviours - seek an expert opinion sooner rather than later!
Do not listen to anyone who tells you to 'wait and see' or that it is better not to label your child. Your friends and family who say that are often doing so because they want to reassure your concerns but the evidence does not support this approach. According to the Australian Medical Association, current research suggests that ASD can be reliably diagnosed at two years; a recent international review found that diagnosis often occurs at three years of age. An analysis of Medicare data found that the most frequent age for diagnosis in Australia is 5.9 years.
Additionally, diagnosis can take a long time, during which you are losing the vital opportunity to support your child in their most formative years.
In a survey of parents and carers of children with Autism in Australia, 34 per cent reported waiting over a year for a diagnosis, and close to 20 per cent reported waiting for more than two years.
Early intervention is key to ensuring your child gets the support they need and have a right to, essential to you adapting your parenting strategies and to ensuring your child has the opportunity to join a community of others with the same neurology as themselves. Don't put it off!
2. Your child being diagnosed as autistic may create a lot of mixed emotions for you as a parent - that's to be expected. It's what you do next that matters.
Don't be caught up in your child's diagnosis. Acknowledge it. Accept it. But don't let it overwhelm you. Never regret the life you could have had because it was never going to be. It was never yours to have.
Find ways to deal with your emotions and feelings. You may feel grief, sadness, disappointment, regret, despair. You are allowed to have feelings, you are human, after all.
However, you shouldn't project these feelings on your child. Respect them. Love them. Support them. But never blame them or resent them or their needs.
Get counselling to deal with your grief if you need to, or join parenting support groups that can help you. Do what you need to do to get to a happy place.
Then...Celebrate your child in all their wonder and concentrate on their strengths. Build a life that works for your family and don't waste your energy on trying to fit in or look 'typical'.
You may be dealing with additional needs, stress, pressure and responsibility. And that's hard, I know it is, I'm living that life too but don't let these things take away from your happiness.
Look for the positives - there are many!
3. As someone told me when my son was diagnosed, you will need to be tougher than you were before.
You will need to become an active advocate for your child, start to build a support team and you definitely have to fill out a lot of forms!
The NDIS planning and funding process requires you to understand and actively request the support that your child needs. It can also be challenging to navigate the educational system and work out what the best option of schooling is for your child. You are likely to be dumbfounded by the lack of knowledge and understanding of Autism by many professionals working with children! Likewise, there are also amazing professionals out there who you will be so grateful for and who you want on your support team. At a minimum you need to find an awesome developmentally focused paediatrician, a supportive GP, an early intervention team aligned to your child's needs etc .
For me - advocacy has been the most exhausting and challenging thing about having an autistic child. However, I have also found new depths of advocacy, purpose and determination that I never knew I had!
4. You will probably need to adapt your parenting style and activities.
You may well need to rethink the way you teach skills to your child such as toilet training or getting dressed. Many Autistic children understand expectations more clearly if visuals are used, even if they have excellent verbal skills. You may need to use timers for transitions or consider introducing a sensory diet of activities which help calm your child. You may decide to carefully manage your child's exposure to stressful, noisy environments like supermarkets or shopping centres. You may need to help them learn strategies to interact successfully with other children. Creative, collaborative problem solving as a parent is key to helping create a nurturing and supportive base for your autistic child.
5. Seek and out and listen to Autistic adults as much as you listen to 'experts'.
Autistic adults can give you the most valuable insights about your child and how to best support them.
If you don't (think!) you know any in person, you can seek them out online via a range of 'Allies' groups e.g on Facebook. Be open to what they have to say to you and to understanding their experiences. Sometimes their insights can be challenging if you are a non-autistic person, but they are always inciteful.
6. You may just discover some amazing things come from your child's diagnosis that you never expected!
When your child does something for the first time that they have been struggling with (that others might find irrelevant) your heart will skip a beat as though they were a newborn all over again.
I guarantee you'll see the world in a completely different way than you did before. Autistic children are amazing and unique in what they experience of the world. You might meet other parents of autistic children with whom you will have a special bond and whose children you will love passionately and fiercely. And if you are as fortunate as I have been, you'll find yourself in 2 years time, reflecting that every step you have taken, although unchartered territory, has taught you more than any other experience you have ever had.
From my family to yours - happy World Autism Awareness and Acceptance day. xxx
Click to view this helpful Autism Video - https://www.youtube.com/watch?v=7JdCY-cdgkI