So often I’m contacted by parents whose child has just been diagnosed with autism. It’s a time I remember only too well. A time of uncertainty, or relief and of fear.
For me the overwhelming feeling was that I was terrified I would get it wrong. I didn’t want to let my daughter down, and despite having worked with many children with autism in a professional capacity, I still had no idea how to be the parent that she needed.
These are my top tips to parents currently at that stage:
Give yourself time to feel anything you need to feel.
There is no right or wrong. We all experience things differently. And that is totally ok. Some people feel relieved that at last their search for answers has at last come to an end, whilst others are filled with uncertainty about the feature or fear and sadness about what a diagnosis might mean. However you feel it doesn’t mean that you love your child any less.
Join a support group.
Whether it’s in person or online, having access to parents at a similar stage to you can be a huge source of both emotional and practical support. Sometimes talking to a stranger can be easier than talking to someone close because you can be honest without worrying about how they are reacting to the news.
Read as much as you can.
Find out as much as you can about autism, about strategies which can make life easier for you and your child and about the system. Understanding the way in which your child’s mind works will give you vital clues about both their behaviour and learning. Reading the stories of others will give you both fellowship and support. Whilst understanding the system will you confidence when meeting with professionals.
Don’t be seduced by miracle cures.
There are what often seems like a million different so called ‘cures’ for autism. These are peddled by unscrupulous people who play on the fact that parents are desperate for answers. At best they have no effect at worst they can be dangerous. As a rough rule, if something talks about progress it’s worth looking into further if something talks about cure it’s better to steer totally clear.
Have high expectations.
Just because there isn’t a miracle cure doesn’t mean children with autism can’t make progress. Believe in your child, believe in their ability and find professionals who also believe. Early intervention (structured or unstructured) can make a huge difference, you as parents can make a huge difference and the right school can make a huge difference. Believing that your child can make progress will ensure you do everything you can to put the steps in place to enable them to do so.
Discover what your child is entitled to.
The system is sadly not on your side. Do not wait for professionals to tell you what to do and do not assume that their priority is giving your child access to the best resources. Talk to other parents and read widely to find what is available and what your child should be entitled to (it will vary from area to area).
When you know what your child is entitled to and what support there is in your area you are likely to need to fight for that support. Be pushy, be persistent and do not back down. The sad fact is that right now the children getting the right support are those whose parents do not take no for an answer.
Pick your battles.
The likelihood is there is lots you want you to do. You probably want to work on communication skills, on play skills, on friendships and on coping skills. You may want to tackle food, behaviour and sleep. Just remember that Rome wasn’t built in a day and that you are only human. Take one step at a time and don’t take on more than you can handle.
Remember routines are your friend.
Establishing routines and using either pictorial or written schedules to make sure you build flexibility into those routines, will make life much less stressful not on,y for your child but for the whole family. Remember that for many children with autism life is very confusing, this is a really easy way of making it a little more predictable.
Children with autism thrive when their world is predictable, and you are at the cornerstone of that world. Decide what your boundaries are and stick to them. Don’t allow things today if you aren’t going to allow them tomorrow. It’s much harder at home than at school. The real world is full of grey areas, but the more black and white you can make things the easier your child will find it to cope.
If you do want to learn more you might find our autism section a useful place to start. It’s full of different strategies to try out.
Why not join our private Facebook Group, which brings parents and teachers of children on the spectrum together to discuss strategies to help at home and at school.
Or if you’re looking for more personal support, why not check out our Consultancy Services.
If you join our tribe at the bottom of the post, you’ll receive a weekly email containing autism strategies and resources straight to your inbox.
And of course if I can be of any help then please just shout (or drop me an email).