Over the last six years I have supported hundreds of young people and adults through the process of an autism assessment and post-diagnosis support. Just like autism itself, I have found that getting an autism diagnosis is a different experience for everyone.
For many, a diagnosis comes after years of waiting or knowing there was something different. Whilst it can be a relief, it can also come with a mixture of other feelings including confusion at what this means about them and who they are; frustration that they didn’t know this sooner; or fear about how this will impact them.
For a few, the diagnosis isn’t something they agree with, which can make acceptance more difficult and in some instances the diagnosis they were expecting may not be given but they know there is still something which is left unexplained.
Here I discuss a few things to consider following assessment.
Nothing has changed
I always like to start with this reminder. Autism is just a word and it fundamentally does not change anything about you or your child, other than having additional understanding.
Autism is a difference in the way that you see the world that’s always been there, so the diagnosis is simply a way of describing this in the best way we can with the terms we have at our disposal.
Understanding
Whilst autism is the diagnostic label, this actually doesn’t describe the uniqueness of you or your child’s profile. Every single person with a diagnosis is different and will have a different profile of strengths and weaknesses. So as well as understanding autism, post-diagnosis it is important to also focus on you and your uniqueness. How does your way of seeing the world help you? What are the particular areas you struggle with and how can awareness of these help you learn to better manage situations you may find difficult? How confident are you in owning you and all you have to offer?
Understanding is a journey, not something you just get over night. It will involve reflecting on situations and using your knowledge of your diagnosis to understand how and why you responded or interpreted things the way you did. This will add to your self-awareness and give you new tools for next time.
Learning specific skills and tools to help you
Having weaknesses isn’t unique to you having autism, we all have areas of weakness and rather than avoiding these, understanding and owning them and how you can manage them is a much more proactive solution.
Let’s say you know you find loud and busy environments difficult, having some things you can do to manage these might help that area of your life. Or let’s say transition and unexpected change is a trigger for you, having some ways of managing this without meltdown might be your area of focus. Other common areas of specific skill learning might include social skills, learning ways of starting conversations, improving eye contact or confidence speaking in larger social situations.
There are lots of packages and resources which can help you with a range of skills learning. Don’t forget though, it’s not changing the way you see the world, it is just helping you feel better equipped and like you have more tools at your disposal.
Who to tell and how to tell someone about your diagnosis
This is always a personal one and it really does depend. Some people are happy to tell everyone, others might not want to.
I’d always recommend taking some time to understand things first, so that it’s then easier to explain to others, especially when it comes to saying what you need and how people can help you.
For those of school age, you should always let the school and SENCo know, as this will be essential in them supporting your child and tailoring support, plus making sure any additional resources are put in place. For adults, your manager or someone trusted at work might be a good person to tell so that they can make reasonable work adjustments. You should not be discriminated against because of your diagnosis.
Telling friends and family is a personal choice, but often helpful for them understanding you. It’s important to remember not everyone will understand straight away and understanding will come over time. For any friends reading this, don’t worry if you don’t understand, just accept and treat your friend as you would have before.
There are many useful websites and videos (check out the National Autistic Society) which can give you ideas on what to say to people, but my top piece of advice would be to keep it simple. The three most important things are:
- Naming the diagnosis;
- Naming some things you find hard; and
- Listing some things that people can do to help.
Challenging any unhelpful stereotypes
Stereotypes are littered in our society and most of these are unhelpful and cause people to live according to what they think people think about them or how they think they should be.
In my experience often those receiving the diagnosis actually don’t mind and are more than aware their differences, however the understanding of families can vary depending on what they understand or know about autism. It’s this that I often like to explore, just to check existing understanding and to make sure families don’t hold any unhelpful understandings which may (unconsciously) then play out in how they see the diagnosis.
If any of this resonates with you or you want further tips and support about the diagnostic process or post diagnosis support, please head over to my Instagram or send me a message via my website.
