3rd June 2018
So you have just had a diagnosis. Autistic Spectrum Disorder. It’s ok to feel what you are feeling – euphoric, scared, relieved, upset, happy, confused, panicky, or any other emotion. The big question is what happens next? Based from my own experience of being diagnosed as an adult, what I am about to discuss really helped me. Please be aware though that this is my opinion and is what worked for me, it may not for others but I do hope it helps some people.
Whatever you may be feeling or thinking, my main advice to anyone who has just received a diagnosis is to seek out and communicate with other Autistics.
When I was diagnosed I wanted to talk to and meet other people on the spectrum to find out what their stories were. To help answer the many questions I had, which naturally come from such big news. There is a stereotype that Autistic people are anti-social etc. but this is not true. A lot of the time I think that we want to socialise but find it difficult due to social anxiety and sensory issues. Personally this feeling was stronger for me a few weeks after being told I was Autistic.
My initial contact was to join the National Autistic Society’s forum. Here I was able to post comments and ask questions about what was happening to me. To begin with this was a good resource although it was hit and miss as to whether somebody would respond to something I had posted. For example, if I posted a question along the lines of “I’ve just been diagnosed and I feel upset about replaying past events in my head. Is this a normal reaction?”, I might get a response which is excellent or I might not. It is just one of those things, as you cannot force people to reply to you.
After a while though, it became clear to me that the forum was heavily based around the clinical aspects of autism and I felt I was not getting the connections I wanted. I needed to be able to have proper conversations about what was happening in my life and also I wanted to hear about other people’s interests and stories. I had got my diagnosis so I didn’t need advice on this anymore, which is what the National Autistic Society forum mainly offered. Don’t get me wrong, if you are in the diagnostic process or thinking of starting it, then I would recommend joining as there is some great advice from Autistic people. Also there are avenues of all sorts of discussion on there, which might work for you, so please try it – it was just not the right place for me at the time. Everyone is different but do join the forum if you think it might work for you!
So the next step for me was to perhaps find Autistic people in the real world. There are support groups that exist where Autistic people regularly meet up, but unfortunately there are not enough of them, and they can be located far away. Also many tend to be aimed at the parents of Autistic children and/or carers, which is great – but as an adult this would be no good for me. I was really fortunate and lucky though, as there was such group for adults not far from where I live. I just want to note that there are people who attend this group who travel a couple of hours down the motorway to attend – that illustrates how scarce support meetings can be for Autistic adults.
I started to attend the monthly meetings and it has been one of the best things I have done since being diagnosed. The group offers support, allows me to be myself without masking, helps me to meet and communicate with other people, both Autistic and neurotypical, and much more. We have discussions about both serious topics, like if somebody is struggling with bereavement or having relationship issues, and also talk about less serious things. Often there is a lot of humour, which breaks another stereotype that Autistic people cannot understand jokes. Yeah we can, and often we discuss funny literal sayings that occur in the world with much merriment.
In my opinion, the benefits I get from attending the meetings are crucial to my well being as an Autistic. I am amongst people that understand me and I don’t need to try and fit in or mask my feelings or reactions, which I normally have to do when I am at places like work. This can be exhausting. I can be honest, open and trusting. The key reason for this is I don’t have to explain anything to people, as fellow Autistics just know what I mean. For example, if I talk about sensory overload and how distressing that can be I don’t need to use examples, similes and metaphors, which I would have to do with neurotypicals. Me: “That noise is really painful”, Neurotypical: “Eh? How can noise be painful?” Me: “it’s like a red hot needle being shoved in my head” Neurotypical:”Come on, it cannot be that bad…” whereas at the group I just need to say “That noise is really painful”. It is a shared experience.
All this makes me feel a part of something and that I am not alone. I belong. I believe that this is vital for all human beings to try and find a group that they fit into but especially important for Autistics who often feel they don’t belong to the world that they exist in. Unfortunately not everyone has access to these sort of groups. Check out the National Autistic Society pages to find local groups in your area if they exist – it has directory of services that is great resource. If you cannot connect in real life though then the next best thing is online through social media.
I am not going to go into depth about the pros, cons and dangers of social media other than please be safe. The internet is full of good and bad people, safe sites and dodgy sites, helpful advice and bullying. There are many resources that educate on how to stay safe online so if you are not sure then read them first before joining any social media. It is a whole subject in it’s own right.
For me though social media has allowed me to connect with more Autistic people then I would ever do in real life. I use Twitter for it’s short bursts of information and there is a great hashtag #ActuallyAutistic which allows Autistic people to identify themselves as Autistic to others whilst talking about whatever they want to talk about. Like with the social group it allows me to feel part of a wonderful community, but whereas the group is just once a month, I can access Autistic conversation 24/7 on social media. The connection is there but it is different to real life. I think people can be more intense online at times, so just like in real life you need to find and connect to those that you feel happy with. And this can be part of the fun of the experience too. Another good social media resource to use is Youtube with it’s many Autistic advocates telling their stories. I watch loads and often have that spark of “that is just like me” or “I know exactly what you mean!”
It doesn’t matter what source you find Autistics in, real life or online, the key advice from me is that you find them. I appreciate that it can be difficult and again this might not work for everyone, but for me it was the best thing I ever did after my diagnosis. You can try things, experiment to see what works for you. If you do make connections though, the rewards can be outstanding. You might find some of the problems you might be facing from being on the spectrum, are the same for everyone, discover solutions and tips from others and that the fact that you have shared, has somehow eased the issue.
You might find that you can enjoy the shared experience of the positives of being Autistic such as common intense interests. You might not feel alone or feel that you are part of something bigger. It might even help you to understand yourself better and live a happier life. Give it a go, find other Autistics and see what happens. I’m glad I did.