The After Diagnosis Limbo

Since my son received a diagnosis of ASD in June of this year, there has been so much going through my head. I want to help him over come his difficulties and reach his full potential, and most importantly make sure he is happy, but there is still so much I do not know about ASD, which makes it pretty difficult for me to really help him.

I had been feeling like we’d been given a diagnosis , and then been sent away to work things out for ourselves. Yes, we were given a bit of bumph to read at home, leaflets and such, but most of them just wrote about things I had already found out myself. I don’t exactly know what I was expecting, and maybe I was a bit naive to expect anything at all, but I just thought there would be more support initially. The few months after diagnosis can be challenging. No, diagnosis does not change your child, and yes things will go on as they did before, and having the confirmed diagnosis definitely gives you a lot more to think about. There are so many questions I would liked to have asked, but didn’t know who I could contact for advice, other than parent groups.

During the summer I was invited to a ‘parent training workshop’, and I was excited to learn as much as I could, but came home disappointed. The content of the training was purely about what the condition is, basically the stuff that was in the leaflets they had given at diagnosis, just with a bit more padding. All of it was things I had already learned via the National Autistic Society website, or books that I head read.

At our very first appointment with the pead, when the first mention of autism came about, I will admit I knew very little about it. We were given the name of an ASD specialist who had published some very informative books, which I borrowed from the library the next day. As the months passed by, and more and more arrows started pointing to ASD, I spent many an evening on the NAS website, trying to gain as good an understanding of the condition as I could, so that when the diagnosis finally came, we knew what we were dealing with.

Isn’t this is what most parents would do? Surely no one is getting through the lengthy diagnosis progress without doing a bit of investigating for themselves?

Maybe the training would have been helpful to families who had recently been referred for diagnosis to learn a bit more about what they were being referred for, but I just feel that for families who had already received a diagnosis, it was a bit too basic. Or maybe there’s something wrong with me, and I spent too much time reading about ASD, I don’t know? Maybe I’m being ignorant to the fact that other parents may not have knows quite as much as me? Either way, I left feeling totally disappointed. ( I should add, the training day would have been perfect for other family members, like grandparents, to learn more about ASD, because it was full of information, just not the right info for me.)

Some months before diagnosis, Neil was referred for Occupational Therapy, who can help with motor skills and sensory issues. At the time the OT couldn’t accept him because he was under the radar of some organisation who were working with the school who could offer similar services. It didn’t seem to matter that this organisation wasn’t actually giving him assistance, so we were kind of stuck in limbo. Thankfully, once we received a diagnosis, we were re-referred to OT and accepted.

Neil had his second session with the occupational therapist today, and he has been assessed to determine what kind of help they can offer. I also received and invitation to a sensory workshop which is taking place next month, and I can’t wait to see what that’s all about.

Hopefully we are now heading in the right direction, and we will finally be able to further support Neil, and get answers to the questions going through my head!

Super Busy Mum
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  • Reply vicki October 22, 2014 at 9:46 am

    It must be really frustrating to be stuck in that limbo stage, glad things are moving forward in the right direction for you all! x

    • Reply Lauren October 23, 2014 at 8:59 am

      It is certainly frustrating but yes at least things are heading the right way now x

  • Reply hslater October 22, 2014 at 11:58 am

    I can't imagine how hard it is not knowing what to do to help your child, but with your determination you will get help you need. You have already done so much to help him with your own research!! Glad things are heading in the right direction for you!

    • Reply Lauren October 23, 2014 at 9:00 am

      Yes it's hard but we are getting there! x

  • Reply Jenny Ripatti-Taylor October 22, 2014 at 8:32 pm

    It must be so difficult being in the middle stages of not knowing enough but wanting to learn and help your little one out as much as possible. You sound like you have done great for him just researching and getting as much info as you can. Good that things are falling in the right direction for you. Thank you ever so much for linking up to Share WIth Me #sharewithme

    • Reply Lauren October 23, 2014 at 9:01 am

      It is difficult but I'm just glad things are heading the right way now. As always, thanks for hosting such a fab linky x

  • Reply Claire Toplis October 22, 2014 at 9:16 pm

    I really hope you can all the help that you need x

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