12 Feb Slipping through the cracks: Autism-after the diagnosis

Beatrix Hooper* looks at the years of struggle spent to find the correct strategy and direction for her son George* with tips she shares that helped along the way.

Part two: After the Diagnosis

Some days seem so normal I forget my son George* has autism. Then, I get the phone call from school. There has been an ‘incident.’ Or I go to pick him up from an activity and there is a line of people waiting to speak to me. George has ‘lost it’ over something, and they couldn’t work out what it was. But I’m finding that now there is a diagnosis, there is more understanding and acceptance from his teachers and educators. They know he isn’t a bad kid, he just needs some extra help and understanding.

I think the biggest change now is that I have stopped beating myself up about his late diagnosis. I feel we did everything we could. Autism presents itself in many different ways and it is very difficult to diagnose.  If a child doesn’t have any problems with their learning during the early years of their schooling, (as in George’s case) they are less likely to get diagnosed at this stage. It’s not until they are in the latter half of primary school, or even in high school, when social complexities become too much for them, that it becomes apparent that there is a problem.  So a lot of these ‘high-functioning’ (for want of a better term) kids are not diagnosed until later.

I have learnt to trust my own instincts.

As I read more on autism strategies and we have had more therapy, I realised that subconsciously, we were already implementing some of these strategies. The reason why George has been so calm and happy at home is that instinctively we have known what to do for him. Structure, routine, and a quiet, calm space for him to decompress. Not planning too many activities in one day and that just loving him and accepting him is the best support we can give. This strategy is the one we have used his whole life. Which is why he has so much confidence in himself and his abilities and has a great deal of self-worth.

Talk with other parents who also have children on the spectrum and ask them about their experiences and tips. Insist upon meetings with the teachers so you can share strategies. Keep the lines of communication open. Be patient as these things take time. Some days (or even some weeks) you will feel as though you are drowning in rainbow-coloured treacle, but don’t give up.  Eventually, a lifebuoy will float by, and it will be less of a struggle to keep afloat.

We have high hopes for George.

We have started him on medication to lessen his anxiety at school and this is helping him enormously. In fact, it has been a game-changer for him and given us a life-line. We now hope that he will be able to remain in mainstream school with his friends. We want him to use his exceptional brain and go to university. We hope that one day he will get a job that challenges and excites him and that he will meet someone who accepts him for who he is and might even have a family. We hope that by the time he gets out into the workplace, autism is accepted more readily in the community. But most of all, we hope that he will be proud of who he is, and is never ashamed of his autism.

If you are going through getting a diagnosis for your primary- or high-school-aged child, don’t lose heart. As a parent, I bet you have come up with strategies for parenting your child before he or she was diagnosed. You know and love them best, and you know what they need.

* names changed for privacy purposes

TIPS

• You won’t find all the answers on the internet, so do your research by reading widely. Local libraries often have a wide selection of titles on autism, so borrow as many of these as you can. Then you can buy books that seem the most useful to you for your home library.
• Keep home as a safe, quiet space for all the family to decompress and recharge.
• Remember, there will be other children at your child’s school who are also on the spectrum. Try and find out who the other parents are and ask if you can meet to share tips and support each other. You might also find it beneficial to facilitate friendships for your child with other children who are on the spectrum.
• Ask your child’s therapist slots of questions. If you feel as though a certain approach isn’t working, tell the therapist. They should tailor the treatment for your child, but can only do so with feedback. Also, remember that strategies make take some time to work.
• Ask for regular meetings with your child’s teacher. Keep the lines of communication open to gather feedback on strategies and also any medications you try.
• Once you have the diagnosis, you are able to apply for funding.  This will help cover the costs of therapy, which does add up. It can take some time to come through so it’s a good idea to do this as soon as possible.
•  Be patient. You can’t do everything at once. Strategies need time to work and also need to be introduced one at a time so you can gauge their effectiveness.
• Parenting a child with autism is exhausting, so look after yourself. If you feel you need a break, make sure you take one.