That’s right folks, we finally got a diagnosis of autism for Rufus.
We have been fully aware of his neuro-divergent status since he was very young but our first attempt to get a diagnosis was back in 2019. At that time we couldn’t provide enough evidence to be seen by CAMHS. However in 2020 when the world began truly falling apart, so did Rufus. As an autistic person he thrives with structure, certainty and familiarity. These three things were suddenly completely gone from his life which resulted in huge meltdowns and eventually threat to self-harm.
The day Rufus tried to self-harm was the worst day of my life. I have been run-over, raped, suffered birth trauma and almost lost my daughter to a preventable infection, but watching my sweet boy reach for a knife while screaming and crying was a life-changing moment. That day I emailed his school and let them know what had happened. That same day (a Sunday) I got a call from the headteacher who offered Rufus a place in the key-worker classroom in an attempt to restore some of the structure that Rufus had lost. He also then got me into a meeting with the SENCO to start an application to CAMHs. This time we had enough evidence. By this point we were filming every meltdown. It sounds cold and detached but it was important to gather that evidence. Throughout every meltdown one of us would comfort while the other filmed. Rufus was never left alone in his pain.
Since the world has begun to return to normal it has allowed us to spot things that Rufus does that had been masked by the extremes of the lockdown. We noticed that he had become more sensitive to sounds and textures. There are food he won’t eat now because of the texture, or you have to cook them in very specific ways to achieve a palatable texture for him. When there is too much noise and he gets a sensory overload, he starts to get physical pain in his arms. This is his body’s way of screaming for help. We’re going to be investing in some really good noise cancelling headphones. We have also had a greater sense of how he sees the world. He is literal, very black and white. It’s our job to help him see the nuance, see the grey.
Once we had completed our application to CAMHs we were given counselling. This was about supporting Nick and I in our parenting of Rufus. How we could best support him and strategies we could use to help him learn to cope with the world. Rufus, for his part, has had times of resisting this help and times of embracing it. The whole thing is a constant process of trial and error to figure out what works for him and for us as a family.
After our counselling finished we were referred to the assessment team list. A list that we sat on for the whole of 2021. Last year saw a lot of ups and downs for all of us and to be honest I try my best to be a good mum but I am human and I know I made mistakes with Rufus. The wait for assessment was excruciating, especially when Rufus was crying uncontrollably late and night and we didn’t know how to help or who to turn to for support. We are very lucky though. Rufus’s school is wonderful and have been so supportive. His teacher in particular is an absolute gem. She embraces his computer obsession, she encourages his interest in chess and she always lets me know about anything that may cause him to be triggered, even the small things.
Early this year we finally found out that Rufus was going to be assessed. The assesment process was still online due to covid but I didn’t care if it meant we finally had someone take a look at him. The first session was Rufus on his own talking to an assessor for 90 minutes about all sorts of things. Nick and I tried not to eavesdrop but it was so tempting. I did however hear him explaining to the lady, all the different ways he uses his computer mouse to create things in Minecraft. The second appointment was for Nick and I to talk to an assessor about our experiences of Rufus since he was born. By the end of our appointment the assessor was pretty certain we would get a diagnosis. She and I chatted a bit at the end of the session and as I talked about how hard it’s been, I cried. She was so wonderful though and tried to reassure me that I was doing all the right things.
A week later, while out in Central London with Martha, I got the call. The call I have waited so long for and within a minute of answering I was told that Rufus had a diagnosis. Even as I write this, tears of relief well up in my eyes. I cannot explain how much those words meant. With this diagnosis we have a piece of paper that says we are entitled to ask for help, to access resources that would otherwise be out of reach. This diagnosis helps Rufus to better understand how his mind works, compared to others. It’s like a light switch going on in his head which says ‘this is why you think the way you do’. This diagnosis gives Rufus a place to be in the world. It adds to his identity in the best possible way.
Ever since Rufus was a child he has talked about wanting a family of his own and as he has grown and his idiosyncrasies have become more pronounced I have been so worried that marriage and children might be beyond his reach. Or at the very least, not easy to come by. With this diagnosis we can make sure that he gets the support he needs to navigate the nuances of inter-relationships. It’s like the life he’s wanted is now possible for him and I think he might actually be able to be a happy adult. The ramifications of this diagnosis are so far-reaching and can not be over-stated.
I am so proud of my little boy and this diagnosis is just the icing on the gorgeous cake of him.
