Category: Autism Diet

D-DAY! Diagnosis Day… choices to be made and the surprising grief that followed.

I’m heading back to our Autism journey, back to the summer of 2010.  Since ‘the dark winter’ as I call it, of 2008 we had seen many consultants, registrars, speech & language therapists, other therapists with fancy names, Autism Advisory Teachers and Child Development Practitioners.   Today, we thought was going to be just another appointment with the consultant… the one we finally found that took us seriously, who could see that there was something not right and recognised a link between diet and the brain.

We’d already seen Dr McGreggor several times where she assessed Ellie’s behaviour, how she played and interacted and took a ‘progress report’ from us.  What we weren’t expecting was for her to offer us a diagnosis.  It had been two and a half years since we started this journey and now my heart was galloping at what she was about to say.

“Ellie is certainly on the autistic spectrum and I would say she has high functioning Autism.  I would say she is borderline, and with that, you don’t have to take the diagnosis, if you’d rather not?”

I heard the words, I nodded, but it was like one of those outer body experiences.  Were we being asked whether we would like to take the diagnosis?  WTF!

The consultant went through the pros and cons (of which I just don’t remember now) but one was that with a diagnosis, we would be able to access better support.  If having a diagnosis meant a better chance of getting help, then there was no question.  Whilst I would’ve loved to stick my head in the sand and pretend this wasn’t happening, it really wasn’t an option.  Ellie was still the same little girl, with or without a label.  Plus, she had only just turned five years old.  We had no idea how things would progress and change as she got older.

Looking back, I know it was the absolute right decision to make, as things really have changed as Ellie has grown up.  For one, there seems to be an ever increasing gap between her and her peers and she continues to have a 1:1 support at secondary school. I’m sure this wouldn’t have been the case had we not made that choice.

The consultant also agreed that diet had played a huge part in Ellie’s symptoms and confirmed that if we had not changed her diet when we did, she would be in a very different place by now.  The relief to hear that was immense.  Thank god we did what we did and took those ‘poisonous’ foods out.  I won’t lie, back in 2008 it was really hard work as the mainstream supermarkets had barely anything ‘free from’.  My family, especially my mum, played such a huge part in making those dietary changes… it would’ve been so much tougher without them.  I fear, that we may have even given up if it wasn’t for their support and understanding.

So, we decided to go for the diagnosis – High Functioning Autism (or Aspergers), although on our letter it actually says ‘Allergy Induced Autism’.

What I didn’t expect was how I felt in the coming weeks.  Instead of relief… I felt grief.  I definitely went through a grieving process for a good two weeks. Grieving over the daughter we thought we had, worrying about the things she wouldn’t be able to do, fearful for how she would ‘fit in’ with her peers and unsure of where this journey would take us next.

Until next time,

Love and Hugs xxx

So, lets get back to the story.  If I’m honest, most of the summer of 2008 was a bit of a blur.  We had returned from Florida, which went ok considering how poorly Ellie had been in the previous months.

There’d been doctors appointments (but that’s for another blog). We’d also decided that we wanted to try for another baby.  I remember this news shocking my mum as she felt that now wasn’t the best time to be thinking about trying for another child with everything that was going on with Ellie.   Why would we want to risk having another autistic child? What if Ellie didn’t get better?  I knew that’s what she was thinking.

Ellie had been following the diet for six months now and we felt we were getting a handle on the situation (how naive!) and considering our past complications with not conceiving in a previous life (that’s a whole other story!) we figured we may not be as lucky to get caught again anyway. Plus, we couldn’t see ourselves just having the one child – I certainly didn’t feel like I was done with the whole babies and pregnancy thing.

So, with a possible pregnancy on the cards, we decided to book a little getaway for ourselves to New York (ok, not that little) in November – at the earliest, I could be in the early stages of pregnancy – and if we didn’t do it now, we might not get around to it.  Mum and Dad kindly agreed to have Ellie while we were away.

So, lets fast forward to late November.  I was 12 weeks pregnant (wooo hooo!) and we were going to New York in two days  but for the past week Ellie really hasn’t been very good.  A lot more moany and any little instruction was met with confusion and meltdowns.  Simple things like ‘sit down’ and ‘put your coat on’ was lost on her.  It was clear to see that she was starting to regress again.

So, in a panic we made a quick dash to the Kinesiology lady that did the weird stuff with little bottles.  Once again, I held Ellie’s hand whilst she sat on my mum’s lap and I raised my arm up (and sometimes not) each time the lady put a little bottle of something on my cheek.  I didn’t know what was being tested and neither did the Kinesiologist but it turned out that along with the usual suspects, Rice was now a bad guy!

WHAT!! Something else we now had to eliminate!  When we thought about it, Rice was in a lot of what Ellie was eating as a substitute to the wheat and gluten so she had now become intolerant to it.  That seemed to happen pretty quickly with Soya earlier in the year which we were warned about from the York Test Nutritionists on one of our telephone appointments.

This was not great timing.  We were due to go to New York in less than two days, we now needed to sort through what Ellie could eat while we were away. Thankfully, Mum was ‘on it’ even quicker than I was.  She had everything sorted out ready for when we went and assured me that Ellie would be fine.

So we went to New York and had an amazing time – apart from feeling absolutely shattered from walking for 10 hours a day and growing a baby… and not being able to enjoy a beer in a New York bar 😦   We rang home often to check on Ellie and was assured that everything was fine.  Apart from it wasn’t.  Mum and Dad had taken Ellie to visit my brother and his family for the weekend and whilst she was there she was extremely upset, and unsettled… they just didn’t want to tell us while we were away.

By the time we got home the following Wednesday Ellie was just coming out of this withdrawal period and was starting to follow things a little better.  Mum knew that had we known how bad she was on the Saturday before we flew, we may not have gone.  We couldn’t believe the effect food had on her.  Once again, Ellie had become intolerant to something that made her regress.

Thankfully, over the months, we managed to reintroduce Rice back into the diet.  We now knew that too much of anything could cause Ellie to become intolerant.

For this last year or so (2016-2017), we have become a little more relaxed with the diet. Back in the day we were so anal – making sure there could be no contamination of wheat or dairy. However for a while now, we’ve allowed the odd bit of chocolate or a burger if we’ve been out and stuck for food options and some cheese on her gluten free pizza on ‘Pizza Friday’!

I have noticed recently though, that some of Ellie’s behaviours have become more extreme. She is getting easily confused, not understanding what I am saying, extreme mood swings and slurred speech. Of course, this could all be the process of becoming a teenager (god help us!) but when you have a feeling in your gut (excuse the pun!) you need to act on it.  We’ve already had a Kinesiology test which is great if you want an immediate answer, but it revealed 11 different foods!  We needed something more conclusive (ie; whether something was severe or borderline) – so yesterday, YorkTest received a small blood sample to get Ellie re-tested for food intolerance … so now we wait!

For more information on YorkTest visit: http://www.yorktest.com/products/foodscan-junior-test/

Until next time….

love and hugs xxxx