Diagnosis, Labels & Acceptance

November 2011 is a time that will be etched in my mind for a long time; as this was when the Speech & Language Therapist first mentioned the word autism to us.  Don’t get me wrong, this did not come out of the blue, and was something we had been expecting for a while. It still felt like a stab to the heart.
 
I have often been asked whether I knew something was wrong and when that was. The truth is, things had never been right from the start so it was difficult to tell when the warning bells first sounded. I trained as a Nursery Nurse and when professionals asked me questions such as “Is he pointing? how does he interact with other children? how many words does he have in his vocabulary?” I was fully aware of what they were getting at. As early as 2010, on a family holiday, I spoke to a mum of a teenager with autism and told her that I felt people were trying to insinuate that Joseph may also have autism. I vividly recall her response; she pointed out how Joseph was interacting with another young child, that he was very different to her son and that she didn’t believe he had autism.  I clung on to those words for quite some time in the belief that who would know better than a parent?
 
I knew that once he had been referred to Speech & Language Therapy, through their observations and onward referrals was usually how a diagnosis followed. The fact we were referred to Ryegate Children’s Centre in itself, was another clue that things weren’t quite right.  Ryegate is a specialist unit attached to Sheffield Children’s Hospital where a range of experts assess your child and provide help, support and guidance.  I began to resent our appointments, as that’s where children with disabilities were and that wasn’t where we should be. It wasn’t how my life plan figured in my head and I was desperately hoping someone had made a stupid mistake. 
 
Each time Joseph spoke, pointed or played alongside another child I wanted to shout out “You’re wrong, he is progressing. It’s just taking him a little longer than everyone else!” Of course he was entitled to progress a little later than his peers as he had spent the first 18 months of his life awake most of every night and covering every section of our house in regurgitated food. How on earth could he have time to reach these key milestones that everyone seemed so hung up about?
 
So, months after our first referral we finally heard THE words. “We think based on all observations, Joseph has Autistic Spectrum Disorder.”  And at this point I sobbed in a very controlled, quiet manner. I no longer had the 3 year old I had walked in with. I didn’t just have a son, I had a son with a disorder. 
 
The follow up meeting was with the Paediatrician, Clinical Psychologist, Speech and Language Therapist. It was an easier meeting and seemed somewhat a formality; were all in agreement of the original diagnosis. We were asked lots of questions whilst Joseph played and they once again observed his behaviours.  It was remarked that Joseph was a happy, affectionate and engaging boy whilst playing to the crowd in no uncertain terms and showed them his best singing and guitar moves. The Paediatrician told us about the spectrum and the umbrella of conditions. She did not feel he had Aspergers, neither did he have classic autism as he wasn’t non-verbal, so would class him as having Autistic Spectrum Disorder.  I know for a great deal of time after, if forced to label Joseph I always said he had Autistic Spectrum Disorder, not autism as it seemed the lesser of the two evils.
 
I initially only told people in my close circle of family and friends about Joseph’s diagnosis or when the situation necessitated which I will expand on later. I was given an array of information that I did not want to read and certainly did not want to attend any support groups. I hated the words disabled, autistic and ASD and yearned for what everyone else seemed to have. 
 
I recently learned about the 5 stages of grief (Denial, Anger, Bargaining, Depression & Acceptance) and I was certainly grieving at this point and no doubt in denial about his disability. I know I have hit all of these stages and can’t say that they are behind me.
 
On some of the literature I was given in those early days, there is an analogy about a parent and their feelings on having a child with special needs. It goes something along these lines:
 
You and your friends are all going on the most wonderful trip together to Paris, which you all take joy from planning together and it is the most exciting time for you all.  You spend lots of time talking about how you will get there and what you want to do whilst you are there, after all Paris is a beautiful city. However, at the last minute someone tells you that you aren’t going to Paris with all of your friends. The trip you all planned together is still going ahead but without you and when they come back they will want to talk about Paris and all the fun they had there. You are now going to Amsterdam, but you will be going alone. It will be hard because you think you will have nobody to discuss your trip with and you desperately want to go to Paris.  After all, that is where you planned to go and all of your friends are going and understandably you are quite upset. It takes you a while to realise that Amsterdam is beautiful also. Yes, it’s different to Paris but beautiful and fun in it’s own right and you will enjoy that trip just as much as the others enjoy Paris but for different reasons.
 
 
It’s fair to say that when I heard this story, it broke me and I can completely understand where it’s coming from. You may think, from the person you know now that  I have finally come to terms with my change of destination. I haven’t and I still want to get on that flight to Paris with each and every one of my friends. I hope one day I will be accepting of my alternative trip, but maybe it will be to Rome and after all Rome wasn’t built in a day.
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12 Comments Add yours

  1. This is a great insight, looking forwards the next post x

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  2. Beautifully written Hun xxx

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  3. Enjoyed reading Tina. You hid all these feelings very well in your day to day life x

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  4. Leanne Lewis says:

    This comment has been removed by the author.

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  5. Unknown says:

    I can so relate to the destination story! I'm so grateful for this blog being recommended to me and I look forward to following it. Thank you for setting it up

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  6. Emma Moss says:

    Thank you so much I have come across this after reading about Ryegate. My daughter has been referred. We all thought millie was autistic but after the conclusion all unanimously assessed a her as not. Millie sounds exactly like Joseph to a ‘T’. Your thoughts and feelings are identical to mine. Nobody feels like you do as a mummy dealing with the pressures and stresses of motherhood, working and averaging 3 appointments a week not including the sleep deprivation. Nobody understands that you can’t just go to a play Area and have coffee whilst the children play (Millie would attempt to kill other children). Thank you so much xxx

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  7. Joseph and his Amazing Spectrum Coat says:

    Thank you for taking the time to read and to comment, it’s great to know people can relate to some of what I write. Other than saying Millie isn’t autistic have they come to any other conclusion? X

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    1. Emma Moss says:

      Thank you for your reply. All professionals keep saying is that she’s an enigma they can’t put their finger on what is wrong. We have had Mri scans which have proven nothing. They are looking at adhd and oppositional defiance disorder. Millie like Joseph had terrible reflux to points of being hospitalised at Sheffield children’s hospital. She’s been statemented getting range 5. Sorry I’d not mentioned she is only 3 and looks like a 6 year old! I live in the Barnsley area and without any diagnosis can’t go to any support groups. Xxx

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  8. Joseph and his Amazing Spectrum Coat says:

    Lots of different labels these days now! Keep parenting and doing the best you can which is what I’ve always tried to do before Joseph pre and post diagnosis. Are Ryegate being helpful? They were great for us, but I know that people have different experiences.

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    1. Emma Moss says:

      We are still waiting for our appointment to Ryegate, I’m hoping and praying we will get somewhere we’ve been going through the system for nearly 2 years. It becomes emotionally and mentally draining.
      It’s all we can do isn’t it.
      Thank you xxx 😇

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  9. Joseph and his Amazing Spectrum Coat says:

    Keep me updated and good luck. I’m sure you are doing a fantastic job 😊

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