The 7 Stages of Processing an Autism Diagnosis

Autism DiagnosisIt’s been a tough few months in my house while we come to terms with our eldest daughter’s ASD diagnosis. Although the diagnosis itself did not come as a shock, the way it has affected me very much has been.

At the core of all this is the other A word people like to use a lot: acceptance. I thought it might be useful to share my insights on processing this information.

The 7 Stages of Processing an Autism Diagnosis

1. I’ve spoken before about my kooky gut feelings, and how I’ve known that something wasn’t quite right from when my daughter was a small baby. I feel that it’s absolutely imperative for us parents to tune into these instincts and use them to our advantage.

2. Once hubby and I decided to pursue a diagnosis, our first port of call was going to the GP for a referral. Getting that first appointment with an ASD specialist can entail a lot of waiting, so be prepared. If you have private health insurance speak to them and see if you are covered. Fortunately for us we were, but they only gave us two appointments so it was vital we got in front of the right person.

3. After being assessed during our first appointment Dr. K indicated that she felt P had high functioning ASD, but before she could diagnose we had to go through the formalities. This involved completing many questionnaires, also our GP and P’s school doing so. Again this can end up being an arduous process, so be prepared to play the waiting game.

4. During our second appointment we went through all the answers on the questionnaires, and Dr. K informed us that P met the criteria for high functioning ASD. I left her office feeling shell shocked, which was unexpected.

5. The quote to the left sums up this stage for me. I know in my heart of hearts that I’ve been having a pity party, crying inside asking: ‘why me, haven’t I suffered enough’? I’ve been grieving for the family I thought I would have, and slowly coming to terms with the idea of the one I’ve got. It’s a similar feeling to the one I had directly after cutting ties with my mother.

6. I’m somewhere between stages 5 and 6 at the moment. There have been many hours of research carried out between hubby and I over the last few months. Looking for classes, support groups, trying to obtain referrals to Child OT and Psychology (cue more waiting). It can feel at times like we are getting no-where fast, but I know that we are making slow progress. We’ve also been reading up on autism, and trying to understand as much as we can about our girl’s world.

Autism Diagnosis7. I am so looking forward to getting to the stage where we can see the light at the end of the tunnel. I know it’s a way off, but with enough hard work anything is achievable, that much I know for certain. We’ve been following a tried and tested ASD rewards method, focusing on specific behaviours that we want to reinforce and we have seen improvements. Long may they continue!

Have you gone through the autism diagnosis process?

Did you experience these seven stages or similar?

I’d love to hear from you in the comments section with any advice you have for me.


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24 thoughts on “The 7 Stages of Processing an Autism Diagnosis

  1. Thanks so much Michelle, really kind of you to say that. Autism is such a minefield isn’t it! I’m definitely coming to terms with it all now though, hope you are too. I’ll check out your blog asap 🙂

  2. I love your blog! This post is very good. I have a child with Autism and number 5 particularly hit home for me. I asked myself the same question. If you are interested, you can read it. I have written two posts about him so far as I am a new blogger. Looking forward to reading more posts from you.

  3. Makes perfect sense Kirsten! Thanks for your insightful comment, as always 🙂 acceptance is the way we deal with life’s challenges, and I’m not one to lie about how I’m feeling. Makes it a tough process, but once. I’ve gone through it, I’ll be truly ready to move on and embrace our circumstances…nearly there!

  4. Best of luck Katie, it’s tough going but worth it to access the support. Also for piece of mind, and for us parents to learn about our kids worlds xx

  5. We may be about to embark on an ADHD diagnosis although my daughter is 14. This post has been really helpful! Thanks for linking up with #sundaystars xxx

  6. Thanks so much Maddy, your kind and thoughtful words always bring a smile to my face. We will get there, and we will figure it all out. This right now has been so tough, but we are making progress and I have to hold on to that xx

  7. They really are very wise words, it’s always interesting to hear the opinion from the perspective of someone else in that situation. We’re getting there… slowly but surely xx

  8. Thanks so much Tracy for your thoughtful words. I know I will come to terms with it, but there has been such a lot to take in and it’s only natural to take the time to process the information. You’re right though, and I can already see how beautiful the autistic mind can be, unfortunately for our girl her frustrations and anger get more airtime. This is definitely changing, albeit slowly. I guess my biggest concern is figuring out how she is going to thrive in a world that can be so cruel when you’re different to what society deems to be ‘normal’. We’ll get there, I know we will!

    Very best of luck with your own diagnosis, I’ve heard several mums of autistic kids say it was a revelation to them when they were diagnosed themselves.

  9. I love Tracy’s comment too, very wise words. As always, you amaze me with your sensible and measured approach. It sounds as though you are getting there, but I do know that it isn’t easy and it’s not going to be fast, or straightforward. Keep on keeping on lovely, we’re all here when you need an ear xx

  10. I agree that Tracy’s comment is fab – autism is something obviously extremely challenging but, with recognition and understanding it can also be something quite special. I’m really pleased that you are feeling like there is a light at the end of the tunnel – I know how hard it’s been. Xx #thetruthabout

  11. Yes, they are all important parts of the process, and they have to be done, it’s not complete without them.
    I like this new reply notification feature by the way, it is very useful when commenting on a self hosted blog.

  12. I know things are tough and my heart goes out to you. But, as ever, you write so eloquently and sensibly about it all. I think that quote you use is incredibly potent – we’re all a bit like that about many things in life and an autism diagnosis is a big thing to get your head round, so grieving for the life you thought you would have is completely natural. But to have got as far as you have is brilliant progress and I know you’ll carry on. Things will get better for all of you. xxxx

  13. Thanks so much Denise. I’m coming to terms with it all but it’s not been an overnight thing. I definitely have a clear cut process I have to go through, which is a healthy way for me to deal with life’s challenges. I have to vent, externalise and get my grievances out of my system before I can truly put my hand on my heart and say I’m comfortable with this…

  14. I thinks this is a really important and informative post – mostly when we come across people who have an autistic child, it is a fact the family have been dealing with for a while, and we forget that there is a process to be gone through as well. I think you have an amazingly clear idea of where you are and how you are reacting and coping.

  15. What a fabulous comment. Good luck renee on your life journey. It’s never dull and I admire you in the way you never cease to cope and then achieve. Polly will go from strength to strength now that you understand what’s going on and so will you x

  16. Such a tough journey for you as a family and wishing you all the best as you continue along it and start hopefully getting more answers to questions and finding ways that will work for you as a family. I love the quote that you shared – it is so very true in so many different situations – reality vs expectations is something I think many of us struggle with. Sending virtual hugs your way and hope that the journey starts to ease soon x

  17. Hi Renee.
    This is a tough journey and we have had something different but similar. Our expectations do play a big role in our lives. But for me it is not the expectations that are an issue it is how willing we are to acknowledge our disappointment and our loss. This process allows us to reset our feelings. It is however not easy because as mothers we are scared to feel disappointment as if it is a disappointment in our child but instead it is in the expectation versus reality. It is a strength to allow ourselves to process these feelings because it stops it continuing and it also stops it becoming about our child. Does that make sense ?

  18. It must have been strange to hear it all even though you had guessed what was going on with your little girl. I guess like any news it takes time to process and gain all the knowledge you need for it to become just normal and part of everyday life! You sound like you are doing well and making some progress though! good luck lovely xx #sundaystars

  19. Ours has been a slightly different experience to the ‘norm’ because the child psychologist was brought in first and at nursery age. It was her who persuaded us that we were most likely looking at autism and the ball was rolled from there. He was diagnosed at four years of age and a statement was in place when he started school.
    I’ve had the moments of grief but mainly I see it as a good thing because it’s looking likely that I’m also autistic – highly functioning. You know how bad my life was at school and that was in no small part down to my issues and social anxiety. With the early intervention, S won’t suffer as I did and hopefully he will achieve what he is capable of achieving. I didn’t because I was ignored by teachers who didn’t realise the discomfort I was in. Boys are easier to diagnose than girls as girls are good at masking stuff. I know I was and still am. The fact that she’s in the system at this age is a good thing. She’ll get help sooner rather than later which will give her the tools she needs to survive in a world that overwhelms.
    You’re all on a journey. The autistic mind is a beautiful mind. It’s a great way to see the world. If only more people understood this, our lives as parents would be much easier.
    Hope this makes sense. X

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