Some of you may already know me, but for those who don’t, my name is Naomi
I live in near Manchester in the North West of England with my hubby Lee and two
girls Erica and Kiera.
Autism is something that is dear to my heart for many reasons and has had an impact
on my life in many ways.
For the last 10 years I have worked with children with Autism and during this time have
learnt many things both about Autism and myself. But never did I think that Autism
was something that would affect me significantly closer to home!
As a mother, you tend to know when something is different, and when Erica was around
four we began to notice differences in her behaviour compared to that of her peers.
Nothing major, just sensitivities to clothing and loud noises, not understanding social
cues, and atypical behaviour in certain situations. At the time, we were under a
paediatrician at the local hospital, and I mentioned my concerns to him. I was told that
these were just part of her growing up, and that all children develop at different rates.
So we left the appointment and continued on our way.
Roll on a few years, when Erica turned six we began to notice more little quirks that
didn’t sit right as just being developmental differences to her peers. Lee and myself
sat down and talked about this, as I was beginning to think I was just imagining some of
the behaviours I was seeing, as they were very similar to the behaviours shown by the
children I worked with. Following an incident in Pizza Hut where they had no helium
balloons. Erica went into full melt down and began kicking and hitting me in the
restaurant, and I had to carry her to the car to keep her and others safe we decided it
was time to seek further advice.
So off we went to see the local GP as she had now been discharged from the care of
the paediatrician. I went with Erica and her sister to the appointment and briefly
explained my concerns to the GP. He printed off some information and checklists about
developmental milestones and sent me off to fill these in, and then make an
appointment to come back with Lee, but without the girls so we could discuss in more
Two weeks later we returned to the GP, red book in hand and completed development
sheets. We explained that we had concerns around her sensory processing, behsleep, weight and interactions with others. We went through the developmental stages
sheets and it was clear she had not missed any of the milestones with her development.
At that point we couldn’t have predicted what would happen next, the GP told us that
we were bad parents and that we should attend a parenting and sleep routine course
with the school nursing service! We were given a phone number and again sent on our
way. I have to say on leaving the appointment I was ready to burst into tears, as I
couldn’t believe we were considered bad parents, and deep down we knew there was
something else going on.
The long road to diagnosis
When I spoke to the school nurse the following week and explained what the GP had
said we needed, and all the things we had noticed regarding Erica, I was so relieved to
hear her say, ‘you don’t need a sleep course, you need a referral and some answers’.
This was music to my ears! She explained the steps I needed to take and filled in the
referral for Erica. A couple of months later we were referred to #THRIVE where
Erica and myself went for a chat and they were able to signpost us in the right
direction! They gave us information about a number of groups that Erica could join to
help her develop her social skills. One of which was a session run by Sow the City, this
really helped Erica to engage in activities with other children her own age. She really
enjoyed these sessions, and hopes to return in the near future when they are back up
and running again.
To our surprise the other recommendations from #THRIVE were to self-refer to
Occupational Therapy and visit the GP to get a referral to Healthy Young Minds.
Over the next few weeks we completed the referral process and then waited. Very
quickly we were invited to a Sensory Processing Workshop which myself and Lee
attended. This was very useful and helped us understand more about the sensory issues
Erica has. We then had to trial and document a variety of strategies for the next 12
weeks and send this information back into OT.
By July 2018 we received an appointment for an initial meeting with the clinical
psychologist who met with myself and Erica. From this meeting it was decided that
there were a number of issues around Erica’s behaviour and sensory issues that needed
to be investigated. Following this a detailed history was taken about Erica and our
family, the ADOS test was carried out and a school visit completed we were told that
still more evidence was required in order to obtain the correct diagnosis for Erica,
because she is a girl she doesn’t fit many of the typical diagnostic criteria. By this
point it was March 2019.
Whilst all this was going on we had completed our 12 week trial of strategies and fed
back to OT. In Nov 2018 we met our lovely OT who has completed assessments of Erica
and recommended a number of strategies including specific therapy that can be carried
out daily to support her sensory needs. This support is ongoing and has been so valuable
to help her both at home and school. We have also learnt Yoga with another lovely
member of the OT team.
Finally in June 2019 we were told by Healthy Young Minds that we now had enough
information gathered to take Erica’s case back to panel. The week of the panel hearing
I was very anxious, and found it hard not knowing what had been decided straight away.
I remember getting the phone call as I was driving home from work having collected
the girls from nursery and school. I didn’t want to talk in the car in front of the girls,
so asked the lady to phone me back. Once I got home the phone rang and I was able to
speak to the lady. I didn’t know how to feel when she said ‘The panel has decided that
there is enough information to support a diagnosis of Autism’. Nothing prepares you
for this moment, even though it is the moment we had been flighting so long for. There
was a relief that I hadn’t been imagining everything, but there was also a sadness that
my child would now have this ‘label’ for the rest of her life. However I then realised
that this ‘label’ was not really a label, Erica is still Erica, she hasn’t changed. What had
changed, was the fact that we could ensure both her and us could get the support we
need to ensure that she has the best opportunities in life.
A week later we met with one of the ladies from healthy young minds to discuss Erica’s
report. The report described her in great detail, and there were no surprises about
what had been seen. We asked questions and were given loads of information.
It was an odd feeling as following this appointment Erica was discharged from healthy
young minds. Which as Lee put it, ‘if you break your leg you have lots of appointments,
etc… to ensure you get back on your feet and a ready to go it alone!’ However with this,
we were given the diagnosis and then told here you go. No appointments, just the
opportunity to seek support through a variety of groups. Seems very strange, but none
this less, that is where we are.
If you have read to the end, well done. It has been a long process for us, and we have
had to fight all the way to be heard. Now we have been heard, we are ready to move
forward creating an amazing future for our family.
Now the journey begins…