Does My Son Have Autism Or Not?

It’s been nearly three years since I first spoke to the health visitor about my concerns regarding my son Harry. He had just turned 2 at the time. I first noticed that my son seemed different when he was just 4 months old, but I put my suspicions down to paranoia. As he got older it became clear that I wasn’t just being paranoid and that he wasn’t like other children his age. He would lash out at the smallest of things and he wasn’t meeting the same milestones.

The health visitor agreed that he was delayed compared to his peers especially in terms of his speech and language and social communication skills. He also seemed to have some anxiety and some sensory issues so she referred us to the pediatrician who we waited six months to see.

When we finally had our first appointment with the pediatrician, she agreed that his speech and language were severely delayed but she didn’t agree with my concerns that he may be on the autism spectrum, mainly because he could point and he gave good eye contact. She also said he didn’t appear to have gross or fine motor delay.

Fast forward to the next appointment (another six months later) and she saw exactly what I was talking about. Harry did not play with any of the toys she had put out for him, instead he lined them all up. He would look at her from out of the the corners of his eyes, but not directly. His speech and understanding were still significantly behind and it was clear that he had global developmental delay. She decided to run a genetic blood test to see if there was anything underlying causing his delays but she also wanted to put him on the waiting list for an autism assessment. Finally, she was seeing what I had been seeing for the past two years. I was finally being listened to and taken seriously. It was like a punch in the stomach that someone agreed with me, and a huge relief all at the same time.

In February this year, 2 years after my son was first seen by the heath visitor and 18 months after he was first seen by the pediatrician, we finally got some answers. The blood test showed that he has a tiny piece of genetics missing. He has 4 genes missing from his 15th chromosome to be exact and was diagnosed with 15q11.2 micro deletion. Although this diagnosis explains a lot in terms of his symptoms, his pediatrician was still not ruling out autistic spectrum disorder and so he remains on the waiting list for an ADOS assessment.

Yesterday, after 18 months of being on that waiting list, and after nearly 3 years since he was first seen, I finally got the call that I’d been waiting so long for and because I was in bed asleep poorly I nearly ignored it. However, since it was right next to me and it was a private number calling (which in our case usually means its one of my childrens medical professionals) I thought I’d better answer it and I’m glad I did.

It was the clinica psychologist calling to say that Harry was now at the top of the list and that they’d had a cancellation so could I go in on Monday to which of course I said yes. So Monday is the day we start the assessment to find out whether our son is on the autistism spectrum.

I supose since my son was diagnosed with 15q11.2 deletion the answer to that question isn’t as important as it once was because my biggest worry before then was that we would never know what was causing his delays. That it would go unexplained and that he wouldn’t get the help he needs. At my lowest points during the early days of this long long journey, I even questioned whether my sons delays were my fault. Whether I hadn’t spent enough one on one quality time with him and I wondered if no underlying reason was found , would other people think that it was my fault too? When we got the results of his genetic blood test and I read everything I could on 15q11.2 deletion, it was like a light bulb moment. Everything finally made sense. Harry may not have ticked all the boxes for autistic spectrum disorder, but he did tick all the boxes for this deletion.

Harry already gets additional help at school. He has a special educational needs coordinator and he has an education and health care plan (ehcp) in place so I don’t think that having the autism assessment is going to give us any more help than he already has.

With that in mind would an autism ‘label’ really make any difference to our lives? The truth is probably not but I figure we’ve come this far, we may as well go the whole hog. 

And so in six to eight weeks I will finally be able to put to bed the question I’ve been asking myself for years.

“Does my son have autism or not?”

Three years ago I used to cry myself to sleep wondering what the future holds. Today I know that an autism diagnosis no longer matters. My son is and always will be, just Harry. My quirky, beautiful, funny, loving little boy who has taught me so much more over the past three years than I will ever be able to teach him. He’s taught me the most valuable life lessons and you can’t put a label on that.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This post is linked up with:

Reflections From Me

Marvelous Mondays

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Blogger Club Uk

Best And Worst

Stay Classy Mama

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38 thoughts on “Does My Son Have Autism Or Not?

  1. My son started showing signs of ASD in nursery school but didn’t get the diagnosis until he was about 10. He originally got a statement at 8 but for other reasons. He’s now 17 and I’m trying to get him into a special college but only with a Statement or the new plans can you get a place. That’s one example of how the diagnosis helped. It is a struggle to get the help but don’t give up; you’ll get there in the end. All the best

  2. Gosh Janine I had no idea you have spent so long going through something like this. I do love how you’ve ended the post so positively and beautifully. Wishing you all the best as you move forward. #stayclassymama

  3. Pingback: Does My Son Have Autism Or Not? | Unhinged Mummy Rants | mmmann87

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  5. I love your final quote – such a positive way of looking at it all and a reminder of just how much our children teach us. I’m so sorry that it has taken so long to finally get Harry assessed but glad that you are now getting extra support in view of his 15q11.2 deletion and are now finally able to start the process of assessing him for autism too.

  6. It’s been such a long wait for you! I’m glad you arrived at a place mentally where the diagnosis doesn’t really matter. It’s great that help is already in place & he’s doing well. Thank you for sharing with us at #BloggerClubUK x

  7. This is such a moving post. Sometimes we feel having a word for things makes them less scary, easier to face. But as you say, your son is so much more than a label. All the best. #Stayclassymama

  8. It is really terrible how long it takes, I can not imagine how frustrating that must be! I love the quote at the end and it is so true, he will always be your little amazing boy no matter what. I hope some answers offer some peace,s ending so much love xx #mg

  9. Speech delay was the key thing in us going on our health visitor. Initially she thought he could just be a Kate bloomer but when I bumped into her 6 months later and he still wasn’t talking we got referred to a paed. Anthony was diagnosed with ASD age 4 and had the old version of an EHCP when he started school. He’s since been diagnosed with ADHD and Hypermobility along with anxiety too. Our second child was also diagnosed ASD around 4. So far we haven’t felt the need to test our daughter (3rd kiddy).

    I agree that in some ways a diagnosis can seem irrelevant. The only real reason to have them is to ensure I understand how best to support my kids. For example we sought an ADHD assessment when it became apparent that a sensory diet was not helping with constant movement. In some ways autism is a (hate to use the word) ‘symptom’ diagnosis. If you tick enough certain boxes you get a diagnosis but my kids are very different despite ticking enough similar boxes. Ultimately having a diagnosis has brought many benefits for us but it’s really always been about meeting their needs first.

    Would love to hear more of your experiences.

  10. What a rocky road you’ve been on – lets hope the assessment lays some of your worries to rest and allows you to move forward in a positive light. Your boy will still be the same boy, the one you love unconditionally, but you will be able to help prioritise his needs. Best of luck Janine. xx Thanks for linking to #coolmumclu

  11. its a shame that youve had to struggle so hard to get the test, but it sounds like you’ve succeeded in getting the support your son needs in another area, which is so important. For me the diagnosis isnt important in itself but if it helps you get the help your son needs, then yes it is important. #stayclassymama

  12. As I former special ed teacher I cannot tell you how many hands I have held awaiting the answers parents saught. The label never defines but it does provide a starting point for so many things including healing, acceptance, understanding and correct intervention.

    Blessings to your family.

    #stayclassymama

  13. Good luck with finishing your journey. I haven’t had to go through this but I know for me the limbo would be worse than knowing. This has taken a very long time for you to get any answers, I’ve not heard of this before.
    #StayClassyMama

    • It’s definately the not knowing one way or the other that’s the worst. 3 years waiting or an assessment is actually pretty common from what I hear especially here in the UK

  14. It must be so stressful for you and your family to have to go through such a long waiting period. But it sounds like he’s already getting some of the help that he needs, and you’re close to finding the last piece of the puzzle. Good luck! #stayclassymama

  15. It shocking that you’ve had to wait so long for the ADOS assessment, but it’s a story I hear from parents in our county over and over. Just glad that you did the blood test and got the other results much sooner, and it’s good to know he’s getting the right support x #BloggerClubUK

  16. It seems you have come so far for Harry to make sure he is happy and doing as well as he possibly can which is amazing. I can see your point about having an answer but yet what difference will it make? Perhaps tick a box? But overall he is still your lovely boy and nothing will change that. Hope to read about what happens hun and thanks for sharing with #bestandworstx

  17. I can completely understand your frustration with the HV and desperately wanting someone to see what you can see and know as a mum – otherwise you really do think that you are going mad. It doesn’t make it any easier to hear, of course. I admire your resilience and love your beautiful quote. With your attitude as him mum, your son is destined for great things – whatever the label he is given. Alison x #BloggerClubUK

  18. I’m so glad you’re finally able to get some answers, and work out how best to move forward. Mum intuition is so important and we always know when something’s not quite right..and often have to be pushy to get help too! Thanks for linking up with us for #marvmondays x

  19. Oh gosh what a journey you’ve been on and looks like you are at least near the end in terms of diagnosis. I love your attitude though, your boy sounds lovely and our kids really can teach us so much about life can’t they? Xx #twinklytuesday

  20. We had to wait until my daughter was 12 to finally get the diagnosis that she was dyspraxic and in that time, I completely agree with your quote, she taught us so much. It was a light bulb moment for us too. I hope you get the support you need and in our case, the diagnosis helped us all to understand her better, I hope it works out for you too. Love and best wishes to you both xx #mg

      • I am so glad things have moved on, it was agony, especially because I knew something wasn’t right. Good luck with it lovely xx

  21. I am so happy to see you have learned many life lessons already from little Harry. Just remember, although he finally made it to the top of their list, he was always on the top of yours. Best of luck on this journey. I am certain much more is to come of your special little man. Big hugs! #mg

  22. What a long journey, from start to finish, I know frineds who have gone through similar and it is only the mother who can actually pick these things up at the early stages as only she is with her baby all the time. Well done for pushing for all the extra help you need for Harry, it must make life hard but rewarding at times too and I just adore that blackboard quote. #TwinklyTuesday

  23. I can relate to this entirely! My daughter was just the same, I knew instantly that she was different and we have waited a long time to get any answers. She is due to be seen by CAHMS next May and I think I will finally be able to relax knowing we have answers. Love to you, this really did resonate with me. #mg

  24. It is really tough seeking answers and not getting them. I like your view of the diagnosis because in my line of work I see that they can be both a help and a hinderance and it is all down to approach. If a diagnosis is used for information and then as a spring board it helps. If it is used as a reason not to move on then it holds people back. Thought provoking post. thanks #mg

  25. I can’t believe it has taken so long to get an appointment. Wow! Although there is an upside which is very clear from your last paragraph. You’ve had some time to come to terms with things and you know that it doesn’t matter what the diagnosis is – he is ‘just Harry’. Your last paragraph brought a tear to my eye. “Heโ€™s taught me the most valuable life lessons and you canโ€™t put a label on that.” #mg

    • Aw thank you. You really so right in that maybe it’s a blessing in disguise that it’s taken so long because if they had said “yes, he has autism” 3 years ago I would have been devastated. Now after having taken the time to find out so much about it, and seeing how Harry has progressed, I know to going to be ok.

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