Our Journey To An ASD Diagnosis.

This blog is written with permission from my daughter, we have written this together as our way of raising awareness of the journey in getting her diagnosis, to raise awareness of the challenges a teenage girl faces but also to break down some of the stigmas surrounding young people with autism.

She was 11 years old when I first noticed things were getting difficult for her.  Friendships were getting harder to maintain, every day seemed to be another drama.  At first, I didn’t think much of it, I put it down to typical pre-teen hormones and a moody group of girls who just couldn’t get on.  Then came the complaints, headaches, belly aches, every day there was another reason not to get up in the morning and not to go to school.  Before long these aches and pains became so frequent and interrupting I had no option but to think that there was more going on than a girl avoiding school.  

Fast forward 12 months and we start secondary school, brilliant right!  No.  That new start we were holding on to, clinging on for a new set of friends in the hope that it would help her settle down and want to be in school at last.  All those excitements as a mum wanting to watch her daughter start secondary school came crashing down within a matter of days.  We were still having headaches, belly aches, backaches, everything aches.  Only now we were also accompanied with anxiety, crying, and sulking every morning before school.  That was on the days we could get school uniform on and get to the school.  Now these weren’t any typical ‘sulks’ as you could put it.  When these happened, they were in one way scary, in another way sad.  As a mum it felt like I was torturing my child every day, the screams were ear piercing.  Hearing her shouting out, and not saying I don’t want to go in, it was “I can’t go in” and that was the worst.  This was accompanied daily with multiple episodes of kicking, hitting, sometimes biting.  This could have gone on for hours depending on the length of time taken to try to get her into school.  It really was a battle of the wills.

Now we were really lucky, we had an amazing paediatrician who was monitoring her headaches and had also involved CAMHS (Child Adolescent Mental Health Services), so we felt like to some extent we were being listened too.  Not everyone is this lucky, and getting that initial referral is a long process.  However, if you stick with it, keep going and never give up you will get there.  Remember as a parent your voice is your child’s voice.  I had to be the voice for my daughter and at times that voice had to fight hard.  Those days when we sat across the table to senior people in school being told to just bring her in and ‘let her get used to it’ and that she was just ‘being a disruptive teenager’ that voice became more determined than ever.  You see deep down I knew my daughter, and I could see in her eyes that there were words she wanted to speak but couldn’t get out.  As frustrating as that was for me, I still to this day cannot imagine the frustration she must have felt in those meetings.

Through all the persistence and patience waiting for appointments and assessments I continued to be the ‘good mum’ that everyone wanted me to be.  I fought day after day to get my girl into that school.  To no avail I may add.  I learnt very quickly just how stubborn she can be, how adamant she is when she sets her mind to something and how strong she is, mentally and physically.  I can honestly say now, looking back that those strengths in her are going to set her up for an amazing leadership role in the future.  At times I wish she hadn’t demonstrated them quite when she did but then she wouldn’t be the person she is today. 

When we finally received that letter giving us a date for her ADOS (assessment for autism) I was petrified.  There was part of me that initially felt like I had let my daughter down, like I was admitting defeat, yet there was part of me that was relieved we were being listened too and someone didn’t think she was just being a ‘troublesome teenager’ who didn’t like her new school.  It was at this point I remember sitting with her and talking to her all about autism.  We spoke about how skilful and artistic people are, how talented and hardworking autistic individuals are, but also how sometimes they can need some extra help with school, and with learning how to understand things like friendships.  That we were going for this assessment not because anything was wrong, but because if she is autistic it would mean we could arrange the extra help and support for her as she needs it rather than leave her to struggle.  That night despite the usual bedtime difficulties I found a letter written to me, 

“Mum, I want to do this assessment thing, I want to know if my brain is wired differently”.

I knew she understood, I knew then despite my initial mixed feelings I was doing the right thing. 

In the run up to assessment day, school became non-existent.  The fights in the morning were not productive or kind to anyone.  We attempted some schoolwork from home, I faced the letters threatening court action for nonattendance, the importance was placed on keeping the peace and maintaining a safe place for my girl.  I tried everything, learning all the little things that she found comforting, small spaces, the vibrations of the tumble drier, in particular under the dining table with a blanket.  Using these to keep her calm and not stressed worked most of the time, but the thought of attending school still caused a great deal of stress and upset to her.  All those that loved her did all they could to keep her in a routine, it all helped.  Not everyone was that accommodating, and we had to make it work, I became not just a mum but her voice, her advocate, her biggest fan. 

“Your voice is your child’s voice”

On ADOS day I do not know who was more nervous.  Well actually I do, it was me.  The questions running through my head constantly were, what if she masks amazingly and no one sees what I see? What if it’s all in my head and she really is just being naughty? What if she panics in the room without me and they don’t know how to calm her down? What if she doesn’t talk at all? What if?????? My daughter however, walked straight into the room with the staff members from the assessment team without even saying bye, or looking over her shoulder at me and that was that.  Turns out I had nothing to worry about at all. She came out all smiles, telling me she got to draw, and they asked lots of pointless questions.  I couldn’t help but hug her and laugh.  That was my girl after all, blunt, straight to the point and honest.  We knew we would have to wait a while for the report, I knew it would feel like forever, as for my daughter. She just wanted to get some food. 

In the weeks to follow while we waited, we had the big change of starting a new school.  After a year of school refusal this was a very scary thing to do, but also exciting.  A new start, a school with set routines, and the preparation to get her into there had been pretty good.  A phased return followed some home learning, regular meetings with the staff to check in and just the language used when speaking with us made a massive impact.  I can’t tell you the difference it makes when you get your child into school, even though they are late and you are greeted with,

“It’s good to see you, I’m so proud of you for making it in today”. 

Three years on I’m glad to say she’s still in school, it’s not all rosy and sparkly.  In all honesty some days are tough, but I am glad for where we are now.  Compared to where we were with regards to attendance and schooling.  There are no more mornings with kicking and screaming, which we are all happy about.  The “I can’t go to school” is now very much “I don’t want to go in today, but I’m going anyway” which we have learnt is now a routine phrase and to be honest if I don’t hear it in the morning, I wonder what is on her mind.  I am so used to hearing it now. 

My daughter received her autism diagnosis in December 2018, she was just about to turn 13 years old. We were also told she has ADHD and Dyslexia.

When people meet my daughter it’s easy to understand why we went so long without a diagnosis.  My daughter can mask brilliantly.  This means she can mimic the behaviour of others around her, like a mirror.  She doesn’t necessarily understand the behaviours however as she sees others doing things the assumption that it is the correct and appropriate way to behave is made, therefore she will do the same.  

This will never change, I don’t want it to, at times it is quite funny, and as my daughter has got older and become more aware of her surroundings, social groups and their behaviours, she is more receptive to times when we can say to her “do you understand what that phrase means that you said?”

Sometimes the ability to mask can come at a cost, because on the outside it looks like she is able to manage everything, understand all the comings and goings of the world around her it is easy to miss the signs of a sensory overload.  Especially in larger groups such as school, or outings, or friendship gatherings.  It will only be when she is back home in her ‘safe space’ when that overload can be released.  Normally resulting in total shutdown and essentially having a brain break.  

“You are your child’s biggest advocate, they will remember what you say more than schools and other professionals.”

@butterflieswithrainbows

When we are out and about I will with confidence tell others to give my daughter some time because she is autistic.  We will be looked at with quite shocked looks, at times comments have been said as “really, she doesn’t look autistic” or “but she talks so well and gives such good eye contact”.  Well yes she does, but that doesn’t mean she finds it easy, or comfortable.  It doesn’t mean that before she walked into that building, or that room she doesn’t do a mental checklist, ‘look at them when they are talking to me, don’t interrupt, try and listen for more than 2 minutes, don’t swear, be nice’. (this is one example)

Now the beauty of autism is that no two individuals are the same.  So, although I’ve written this about our journey to a diagnosis, and some of the challenges we have faced and either overcome, or adapted too, it doesn’t mean it is the same for every family out there.  In fact, it won’t be the same for any other family at all.  That is okay, your family’s journey is going to be unique to you, it is going to take its own path depending on what you and your child need, and what you ask for.  

Our journey is not over, not by a long shot.  To be honest this part of our journey is only just beginning, I am learning more about my daughter’s little quirks every day, the whole family are, and so is she.  She is now beginning to learn to use her own voice which I couldn’t be prouder of, this means that I can now step back a little with some of the battles for support and requests for help for her, instead I am now her biggest cheerleader.  My main role now is help, support, and encourage her as she grows to embrace her individuality, her talents, her skills, her quirkiness, her totally bonkers moments (which are hilarious by the way) and to help her love herself just the way she is, (not to mention embarrassing her at any opportunity possible).  In return I have a daughter who shows empathy, consideration for others, emotion, a wicked sense of humour, and who is embracing her differences and utilising them to help others.

I couldn’t be prouder of how she has faced each hurdle or overcome each challenge.  I wouldn’t change her for the world.

If you are battling with school refusal, I know how disheartening and disappointing it can be, the constant battles, and never-ending fights with local authorities and schools.  You are your child’s biggest advocate, they will remember what you say more than the schools, always think what message would you want them to hear you putting across for them, what words do they need to hear you say? 

Finally, despite the challenges of the day, the words that are passed between people, even if you have one of those ones (teens) that stay in their room.  They will always hear you tell them you love them and remember it.  (Advice from my teen) 

Our journey has not been easy, it has not been the hardest.  It has however been our own journey.  We are beginning to own it, and by writing this together we would like to let others know that there is hope.  There is a light at the end, and it is journey you can travel along with the support of the right people around you. 

More specifically from my teen, “Autism isn’t anything to be ashamed about, it makes me who I am, and no two days are the same.  Some days can even be quite funny, especially those days when I am super sensory and I cant tolerate anything touching me, and I jump all the time.”

Photo by Susanne Jutzeler on Pexels.com

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