10 Tips for parents who are new to autism
When you first receive your child’s diagnosis of autism, it can be overwhelming, you don’t know what do first. So if you are a parent who is new to autism then here are my top tips to help you.
1. Allow yourself time
Being given this news, even though you were half expecting it, is lot to take on board. You may have a mix of feelings. A little relief that you have a diagnosis but also a sense of sadness that your child will always require extra support. So give yourself time to process what has just happened. Allow yourself to feel sadness, anger, frustration etc It is perfectly normal.
2. Connect with other autism parents
Quite often, after the diagnosis you can feel a bit alone. Family and friends reactions can be somewhat mixed. On social media, you will be connected with people who are going through similar experiences to you, who share your fears, who understand, who can share advice and offer support.
3. Make a list of important telephone numbers.
It will be handy to keep a list of telephone numbers that you may need. Such as:- The 0-25 SEND team at your Local Authority, your local authority information advice and support for SEND, your paediatrician, CAMHS, the School SENCo.
4. Register as a carer.
Register as a carer with your local authority and your GP. You will be entitled to a free flu vaccine and other benefits. You can request a carers assessment of your needs. You may also be able to apply for carer’s allowance.
5. Look after yourself
Life with an autistic child is really busy and stressful. You must take care of yourself, you can’t pour from an empty cup. Make sure you eat a healthy diet (be sure to eat all meals) and keep hydrated. So plan to take some time out, find out how you can get some respite. At the end of the day, do something nice for yourself, such as take a bath, read a book, do exercise etc
6. Write a list of questions.
It is quite likely that when you come out of your diagnosis meeting, you will suddenly have loads of questions that you wish you had asked. So my advice is to write those questions down immediately and then add more as they pop up. Then the next time you have an appointment with the Paediatrician you‘ll be able to ask the questions that you wished you had asked in the first meeting.
7. Step away from Google
By all means do some research on Autism, just be careful which websites you read. If there is something specific that you want to find out more about, then I recommend The National Autistic Society as a starting point.
8. Remember that you know your child best.
After diagnosis, you may have a multitude of appointments with various professionals, such as Occupational Therapists, Speech and Language therapists etc. You are the expert on your child, so be sure to insist that what professionals are doing is correct for your child.
9. Don’t worry what other people think or say.
As I mentioned earlier, reactions from friend and family can be somewhat mixed. Here are some potential phrases that people might say.
‘Everyone’s a little bit autistic.’
‘He/she’ll catch up soon.’
‘He/she just needs a good slap.’
‘They’ll eat when they’re hungry.’
‘That just means they’re naughty.’
Honestly, just learn to roll your eyes and ignore. Remember, people say these things because they have no understanding of autism. If you wanted to, point them in the direction of appropriate reading material.
10. Try and see the funny side.
In all honesty, being a parent of an autistic child is exhausting. But it can also be hilarious. Edward makes us laugh all of the time, he’s great at doing Penguin impressions. Everyone who meets him just loves him and he makes everyone smile. So when your child is out in public and shouts ‘Hello Granny!’ at every old person he sees, just laugh.
You can do this, you are stronger than you think but don’t ever be afraid to ask for support.
