I read a really helpful blog post a while back that highlighted the top 10 pieces of advice that a mother of an autistic child wished to pass on to parents with a newly diagnosed autistic child. My son was diagnosed just one month ago and I wanted to share my own top tips in the hope that it might be useful for others just beginning their family lives ‘post diagnosis’.
1. Nothing is different
Your child hasn’t changed since the day before their diagnosis. The day after their diagnosis is very likely to look a lot like the day before their diagnosis. You’ll get up, have breakfast and do all the same things you’ve done every day. A diagnosis will not change what happens from one hour to the next.
2. Everything is different
I just contradicted myself, right? Well not really. Because whilst the hours will pass much as they always have, you now have this word ‘autism’ and all the tomes of information that come with it. The effect of having the label can be really helpful once you process and accept it because instead of seeing your child’s behaviours as problems to be solved, you might be able to see them as just part and parcel of the little being you love.
3. Find your tribe
Hands down the best thing I did was to reach out and connect with people who had walked before me and were flourishing as well as those who were just beginning along the path. A word of warning here, you want to be really selective when searching for supportive friends. The Autism ‘world’ is big and filled with lots of different perspectives, so being particular about finding those who are on your same wavelength is key. You don’t want to land in ‘Spank them until they behave’ land if you are more of the ‘let them eat cake for breakfast’ kind of family.
4. Google ‘neurodiversity’
Just that. It will give you a road map. And it’s really cool.
5. Don’t rush it
A new diagnosis comes along with bucket loads of information and it’s of the ‘one size fits all’ category. It will be assumed that you are looking to get your kid school ready, line up a terms worth of visits from Occupational Therapists, Speech Pathologists, Child Psychologists, get them sleeping on their own all through the night and any other number of ‘you’ll want to do x, y and z’. You may want to do all this. You may not. Refer back to point 1 and remember that today is pretty much the same as yesterday, so what you do is up to you.
6. Your child is the expert
Depending on their age and skills, asking your child what they want help with is always the best first option. If they can’t tell you, then you are the next expert in line to try and interpret what their needs for support are. Most of us grew up with the ‘doctor knows best’ concept so it can be hard to hold your own against lots of people with fancy offices and qualifications after their names. Remember that none of them know your family or your child but you do. Take the drivers seat and choose the destination your family wants. Professionals can support you to get there, but that’s it. They shouldn’t be at the steering wheel.
7. Your extended family and friends will all react differently
Some will go straight to completely supportive. They are gold. Thank them. Others will nod and you’ll have no idea what they’re really thinking. Some will go into denial. All this is very hard if you are still processing your own thoughts about the diagnosis. Build some boundaries and buffers and know that time may be needed by everyone to feel acceptance. My more experienced mentors tell me that some people will just never reach acceptance. This is their problem and not yours. As much as possible, leave them to it. You have more important things to do like making sure your kid has pants on before you leave the house.
8. Check your assumptions
Another word you might want to Google is ‘ableism’. If you’ve had very little connection with disabled people, you’ll likely be carrying a closet full of prejudice about disability that you’re not even aware of. I consider myself a fairly educated and sensitive person, but it was there, lurking all the same. It will come out in your thoughts and in your language. That’s ok. You just have some learning to do. The best way to educate yourself is to listen to disability advocates and autistic adults. They are your child grown and I’m sure that you would want people to listen to what your child has to say about something that affects them first and foremost.
9. Resistance is futile
Begin to find ways to let go of all the social conventions around family life that really don’t seem to fit well with neurodiverse (you’re googling that, remember?) families. Struggling with resistance to the family mealtime? Let everyone eat where and when they want. Battling to get your kid out of their pajamas for the day? Let them go out in pj’s if it’s their preference. And bedtime battles? Consider abandoning specific bedtimes like most parents in the world do. While some autistic kids do thrive on structure (so I’m told), many don’t and letting go of all the rules (ok, except for health and safety ones) might just be the answer to a more trouble free day for your family.
10. And finally… know that the day will come when you won’t think of the word Autism when you first wake. When you’ll go to bed at night and it won’t be the last thing on your mind. You’ll have gone through a whole day hanging out with your child without a head full of autism ‘stuff’. It took about three weeks for me to get there but when I did, I realized that nothing has changed. And everything has changed. Happy travels.