What Difference Does Having a Diagnosis Make?

It’s a discussion that I often have with parents; I read about online and I get involved with posts on social media where there’s a good debate going about the pros and cons of having an assessment for any possible neurodivergency. I would never seek to tell someone what they should do because any form of assessment is a personal matter and a decision can only be made by the individual based on their own thoughts and opinions. 

At the beginning of my assessment my assessor asked me what I wanted out of the assessment process and what a difference a possible diagnosis would make to me. I think this an excellent place to start when thinking about going forward for an assessment. I replied that I wanted to understand why I found certain aspects of my life very difficult when others didn’t. I wanted to understand why I’m a confident person, but anxiety and social anxiety can debilitate me, why my conscious can be calm, yet my subconscious is doing backflips and wakes me up to ruminate over and over and I wanted to understand why my sensory difficulties were so crippling and if there was anything I could do to help. 

I also wanted a name for my difficulties instead of having to either mask and pretend all was okay (which has a ‘cost’ to me in that I am exhausted at the end of a day/event) or just not be able to go to something I’d been invited to (apologies to the many people I have let down over the years) and I wanted to stop making ridiculous excuses as to why I couldn’t do something. I wanted honesty so I could be more real and honest in life. 

It was very clear as to why I wanted an assessment and what a difference a diagnosis would make to me. So start by asking those 2 questions of yourself or your child. 

  1. Why do you want an assessment?
  2. What difference would a diagnosis make?

If the possible assessment if for your child you may want to have a diagnosis in order to use to ensure that your child is receiving the support they need or are entitled to. An autism diagnosis means your child will be covered under the Equality Act (2010) because autism is considered a disability (many autistic people don’t consider themselves ‘disabled’ but lots do. I use this term in order to explain how a diagnosis can help protect you or your child in law and not as something that is or is not my opinion. I always defer to using terms that autistic people are comfortable with themselves and this may differ for each autistic person).  Disability is a protected characteristic under the Equality Act and a diagnosis is a lifelong difference of which you should expect not to be discriminated against because of it. 

Since my diagnosis I now have a language and vocabulary to use to describe me, should I want to, to others. I have the language of being neurdivergent that includes specific words such as ‘Iren’s’ and ‘Autism’ and I can further explain and self-advocate for myself using words like anxiety, ruminate, looped thinking and other specific words that relate directly to me being autistic or me being neurodivergent. 

I don’t view this as a negative. Self-advocation means to be able to tell people about your thoughts and feelings and to be able to ask for any support that you need knowing you have a right to be supported in the appropriate way. I have done this recently where I’ve said that I’d like to go to an afternoon event but that I will need to go with someone to help with my social anxiety. I have found that since I have been more open about my difficulties but have asked for helped people have been absolutely lovely. If you think about it, if someone had said what I’d just said to you and you were a friend already of theirs, wouldn’t you offer to help too? 

I gave my friend a lift to where we were meeting others and we both walked in together. I enjoyed the afternoon without having a massive build-up of anxiety or having avoided going altogether. My friend also confided that she was relieved I had asked because she felt the same about arriving by herself to social functions. I am finding this that the more I am honest the more it encourages other people to also be honest like it’s a ‘Oh thank goodness you’ve said that because that’s exactly how I feel but I can’t tell anyone,’ thing. My honesty is helping other people’s honesty. It’s a win win situation. 

Another social event where I’ve changed my thinking due to having my diagnosis was the book launch I went to. A new friend was hosting the launch of her latest book at our school (it’s a beautiful building for an event) and I knew I wanted to go. I was more able to contemplate attending because it was at school and I knew the building, where to park the car (a huge issue for me) and the room the event would be held in. Knowing all this really helps.

I was worried about the walking through the door moment where you’ve parked, got out of the car and you’ve got to walk through the door to meet the other people. This is the moment I have always found difficult because I find a group of people overwhelming. I don’t know where to go, how to find someone to talk to and there are no rules to follow that give me a clear pathway of how to navigate the situation. My heart feels like it’s going to jump out of my chest, my breathing goes, and I start to sweat. If I talk it’ll probably be very difficult for me, and I just want to run away and hide. 

I use my phone in times of these, ‘I’m not sure what to do with myself’ moments so after walking into The Great Hall (it really is called that and yes, it’s a fabulously ‘great’ hall) and buying a drink I stood to one side, got out my phone and just played the calming game that I play. 

And it worked.

And I was calm.

Because the mindful game I was playing – that I call a mindless game- had distracted my attention away from the social anxiety and I was quite happily sorting out the colours into the correct places. Once someone arrived whom I knew, I put my phone away and walked over to join them. 

This was perfect. 

Again, I was calm and happy to be there because I had self-advocated (even to myself) what I needed to get through the difficulty I had. By giving myself permission to do something different than everyone else -stand away to the side and play with my phone- I was finally being kinder to myself and allowing my brain to have what it needed in order for me to cope. I wasn’t sweaty, my heartbeat remained steady, and I was happy to be there. 

I’m not sure I would have done this had I not had the understanding or confidence that having my diagnosis has given me. I would have been, as usual, hard on myself or, possibly have just not gone at all. 

My brother self identifies as being autistic and has done for years. During my diagnosis process we’d talked, and I asked him if he’d ever considered going for an official diagnosis and his reply was that no, he didn’t feel a need. He was happy with what he’d read about autism and that he knew he was autistic. He said that it wouldn’t change his life or his work and so he didn’t want to waste the time or money. I completely understand this and respect his decision just as he respects mine. Not everyone feels the need or wants to have an assessment or diagnosis and that’s absolutely fine. 

To conclude

An assessment leading to a possible diagnosis is a very personal journey to start and something I would only ever give my opinion of but not tell people what to do. The age of the person being assessed is important as is what is hoped would be achieved by having that assessment and/or diagnosis. What is missing that needs filling? Is it understanding of oneself? Is it support? Is it legal protection? Or is it, as it was for me, a mixture of reasons? I would always include a child in any discussions (where appropriate for the child). I have done this with my own children when contemplating assessments and while not all my children have been diagnosed with everything they’ve ever been assessed for (my daughter is not, surprisingly, dyslexic like all her brothers and father are) the diagnoses they have always added to their understanding of who they are and given them confidence to self-advocate as and when necessary. It’s so important to know who you are if you’re experiencing difficulties and the strategies and support available to you that may help.

What difference does a diagnosis make to a partner? Click here to read.

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