Is Getting An Autism Diagnosis Worth It?

is getting an autism diagnosis worth it?

In the last few days, articles about an NHS plan to reduce the number of people receiving autism diagnosis’ has been circulating the internet. It says that diagnosis’ will be reserved for the ‘most severe cases’, or cases where other conditions, such as depression, have been identified.

It’s worth mentioning that, at the moment, this only applies to NHS commissioners in South-West London. However, as with a lot of policies within the NHS and the government in general, it has the potential to create a domino effect.

With that in mind, I want to ask a very individualised question…

is getting an autism diagnosis worth it?

Although this blog post was inspired by the article, it isn’t the first time I’ve been asked that question. People I know in real life—and through this blog—have asked me the same question.

Now, of course, as autism is a very individualised condition, the answer will be different for everyone. Some autistic people may feel like their diagnosis has been very beneficial to them, while others will feel like not much has changed.

I wrote a little bit about how my life had changed in my one-year post diagnosis update. However, I thought I’d use this opportunity to go into more depths about what the diagnosis actually did.

my autism diagnosis saved my life

It may sound dramatic that a piece of paper had the ability to save my life, but it’s true. I’ve spoken to people who knew me before my diagnosis and agree with me. I was in such a downward spiral before I received my diagnosis that something had to stop me from going over the edge.

In that effect, autism was my roadblock. A positive roadblock… like a barrier that prevents you from falling into a sinkhole.

I’ve spoken to others who received a late diagnosis who have faced similar experiences. You see it a lot, where people say they knew something was different, but not what.

A lot of my autistic traits were blamed on mental health problems prior to my diagnosis. Anger became a normal emotion for me because of the things I couldn’t change about myself, and I felt like I wasn’t trying hard enough to be normal. I masked everything in social environments, but I suffered for it at home. At the time, I had no explanation to explain why I found things so much harder than other people did.

Do you know how low your self-esteem can get when you’re trying to change things that aren’t wrong? When you’re fighting against yourself when you should be embracing your differences? Trust me, there were years when I thought myself unworthy to live because of them.

So, is an autism diagnosis worth getting?

For me, yes.

My diagnosis has allowed me to live in a way that I couldn’t before. It’s raised my self-esteem and made me believe that I am enough, just as I am. Unlike people think, it hasn’t stopped me from pushing myself, either. Rather, it has made me a lot more understanding and accepting of my limitations. Most of all, though, it has helped me learn the importance of respecting myself, above all else.

I completely understand those who don’t want to get a professional diagnosis, too. It can be degrading and involves a long waiting list with no certainty of the intended result at the end.

However, is it really up to the NHS to make decisions about whether or not someone presents as ‘severe enough’ to go through the process? People—especially females—mask symptoms so well that an initial appointment with a GP isn’t enough to make a judgement call.

I wasn’t referred to get a diagnosis under usual means, but I know if I had been, this ruling would have likely stopped me in my tracks. It wasn’t until I had three sessions with different professionals that they unveiled ‘classic traits’ that I’d hidden from the world for seventeen years.

I’d love to hear opinions from other people about this in the comments below. Do you agree with the ruling? Do you think the NHS has to start making cutthroat decisions in order to survive? Or, are you more on the side that understands the importance of receiving a diagnosis that has the ability to change someone’s life? Let me know!

Thanks for reading, and until next time,

Goodbye

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23 Comments

  1. Jen Gainer

    27/05/2017 at 9:11 PM

    This is such a vast issue facing parents these days. The population as a whole seems to have more children with markers on the spectrum than not, which is a scary thought as the human race marches forward. The information you can get out there to people the better as knowledge is power. Thanks for bringing such awn important topic to the surface.

    1. RebekahG

      03/06/2017 at 3:04 PM

      Thank you for reading! 🙂

  2. Juliette | Namastay Traveling

    27/05/2017 at 9:18 PM

    I was really fascinated with reading the article, & your thoughts on it! I work with students with autism and I’ve seen how he diagnose impacts each person different. Thank you for sharing this!

    1. RebekahG

      27/05/2017 at 10:30 PM

      Thank you, I’m glad this article resonated with you. I’ve met a lot of autistic people since my diagnosis and I definitely know the opinions on getting one are a mixed bag, haha! 🙂

  3. Bethany M. Edwards| Biracial Bookworms

    27/05/2017 at 9:50 PM

    I love how you said that the autism diagnosis helped you accept your limitations. Knowing our limitations helps us conquer our dreams.

    1. RebekahG

      27/05/2017 at 10:31 PM

      Yes, definitely. It also helps to set dreams which you aren’t going to hate yourself for not being able to achieve, which is always a bonus! 🙂

  4. klaunder4817

    27/05/2017 at 10:02 PM

    While I don’t have autism, I have other disorders and definitely agree the need for a diagnosis. I’m so glad you were able to secure that diagnosis and have your life change.

    1. RebekahG

      27/05/2017 at 10:32 PM

      Thank you. I know everyone thinks differently, but it’s nice to know there are others who agree with me! 🙂

  5. She's A Hot Mess (@Ohshesahotmess)

    27/05/2017 at 10:44 PM

    I wish that I had started in the beginning of this story! While I am not autistic, my mother in law is convinced that my husband is. But, she is using it in a negative way, like “well, he is Autistic, so we just have to deal with him being an a* hole.” I am now in search for the beginning of your story though!

    1. RebekahG

      29/05/2017 at 1:34 AM

      Thank you! I think this is the most open I’ve been about my condition on my blog, but there are plenty of posts about different parts of it if you’re interested. I’ve been thinking about writing about how my autism diagnosis came about though. It’ll probably be up in the next few weeks, so keep your eyes peeled! (signing up by email on my blog will send you my posts as they’re published, I think, if that’s something you’re interested in).
      Ah, it sucks that your mother is law is using it in a negative way. I can definitely be blunt when talking to people (especially when stressed/tired), but it’s very much a case of being able to hold yourself accountable and apologise when needed. Autistic people aren’t excusable from human decency, haha! 🙂

  6. Nicole Anderson

    27/05/2017 at 10:46 PM

    I think the old saying ‘knowledge is power’ is very relevant here. The more you can understand about your own condition the more equipped and empowered you are to deal with it. The way you described your experience and reasons for needing to know so well would be equally valid for other people in similar situations. Everyone deserves to have a proper and correct diagnosis as the first step in addressing what is needed to live a more fulfilling and enjoyable life.

    1. RebekahG

      29/05/2017 at 1:40 AM

      Yeah, I 100% agree. I might not reach the same goals as other people my age, but at least I have a reason why and can enjoy my life doing what I am capable of. 🙂

  7. Sarah

    28/05/2017 at 7:36 AM

    For me personally, I fought the medical profession and education authority for a total of 8 years as my youngest was in desperate need of support. He missed almost 3 years of school due to his autism. I would like to know how they are going to come up with a measure of the ‘most severe cases’. My youngest has diagnosis of Aspergers is that severe? To him yes. To another person not necessarily. Autism is a spectrum meaning it affects every person differently, to how on earth are you going to be able to put individuals into clearly defined tick boxes?

    Sarah
    MamiSkilts.co.uk

    1. RebekahG

      29/05/2017 at 1:39 AM

      Wow! It’s always great to hear that parents are willing to fight for a diagnosis and not take what medical professionals say at first light. I missed out on a year of education because of undiagnosed autism (and mental health problems), so I can relate on that behalf.
      Exactly! That’s what I hate about functioning labels. What right do medical professionals have to dictate when someone reaches the threshold when they have no idea how much it impacts someone’s life? It’s disgusting. It’s definitely something that needs to change about the current attitude towards autism!

  8. GirlMasked

    28/05/2017 at 2:41 PM

    Great post! So glad to hear that getting the diagnosis helped you! 🙂

  9. placeinthisworld247

    28/05/2017 at 6:37 PM

    Great post. I, too, knew about my AS later in life. But being labelled as being on the autism spectrum has not limited me, but rather it has enabled me to, like you, know my limitations and accept myself as God made me more.

    1. RebekahG

      29/05/2017 at 1:40 AM

      Yes, I love hearing from fellow autistic people! That’s great that you were able to look at it as positively as I could. 🙂

  10. annemarkey1

    30/05/2017 at 8:33 PM

    I am so glad that you got a diagnosis and that it has helped you so much.

  11. Julia

    03/06/2017 at 7:14 AM

    Even though we don’t have the NHS here in Australia so we’re not dealing with this, I found this really interesting to read. I love how you explained how your diagnosis helped you as well. I’d imagine that for a lot of people finally having a name for some of the things they’ve been struggling with must be a relief.

    Julia // The Sunday Mode

    1. RebekahG

      03/06/2017 at 3:07 PM

      Within the last few days, pressure from a number of charities have forced the NHS to withdraw this ruling, which is great news! It’ll take time before we know whether that’s a “we’ll tell the public one thing, but do it anyway” or if it’s something they’ve really withdrawn plans for, but we’ll see.
      Thank you! Yeah, I know it’s a common theme from the people I’ve spoken to about it.

  12. My Autism Story - Rebekah Gillian

    08/07/2017 at 6:00 PM

    […] You hear horror stories of waiting lists taking forever, with a recent story suggesting certain places in London were going to reserve the diagnostic process for the ‘most severe cases’. I wrote about that a little in my blog post about whether getting a diagnosis is worth it, which you can read here. […]

  13. Mademoiselle

    01/08/2017 at 12:07 PM

    Love it! This has always been a question that I’m asked a lot.. for me it was worthwhile, as it explained why I’m like the way I am, and gave me the leverage needed to ask for extra help-like in exams. I do think it worthwhile, but as soon as I say I have a diagnosis, people see the label, and not me, quite often.

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