So after having my initial adult ASD assessment on 13th April 2017 and it going to a panel to review, I had the feedback letter through the post today.
On the day I filled out questionnaires whilst in the waiting room and then had a 1 hour and 15 minute discussion based on my answers.
Firstly the report went through a lot about what I had discussed on the day in terms of my childhood, how I am socially and certain ‘traits’ such as ability to handle changes, collections of items and sensory difficulties. Many of these aspects I had included in the paperwork that I’d sent in to the practice because I knew that I was likely to freeze on the spot when being questioned directly. What this meant is that I was questioned and guided by what I had aleady shared before the day of the assessment.
The main thing from this feedback report was reading the results of the ‘Adult Autism Quotient (AQ) questionnaire,’ which measures behaviours, feelings and experiences associated with potential ‘Autistic Spectrum Conditions.’ Individuals with ASC typically score 32 or higher and I scored 47.
I then read that:
“The AQ is a screening tool and does not provide enough information for you to be given a diagnosis, but a score of more than 32, then taken alongside the information discussed, suggests that further assessment of an ASC diagnosis is warranted at this stage.”
These are the recommendations given in the report:
One thing I have noticed is that the term ASC is now being used, when I originally received my referral letter it stated it was a referral for an adult assessment for ‘Asperger’s Syndrome. ‘ Since I began blogging in March 2016, I’ve used the term ‘Autisitc Spectrum Disorder’ (ASD) and reading this on a report does make me question if I’m now using the ‘correct’ terms!
I’m fully expecting the journey to a possible diagnosis to take a while longer, I felt happy and sad yet again at the same time, but again a great sense of relief, all those years of doubting myself, questioning who I was, telling myself I was ‘different’ was for a huge reason and to be on the path to having this clarified for me is so liberating.
It is sad though, that my process for adult assessment is so much more straightforward than my own daughter’s, since January ’17 I’ve not really known what is going on in term of Lou’s assessment, no word of any assessments happening in school, no information. And to think that without understanding and researching regarding my own child, I’d have never have found out about myself.
My advice to anyone wondering about themselves being on the spectrum is that it’s never too late, try the AQ questionnaire and take it to your GP.
I will now wait for my next appointment and continue to share my journey 🙂
It was only a few months ago that I even heard the following terms:
After researching I found that the terms ‘Neurotypical’ and ‘Neurodiverse’ originated in the 1990s, but somehow, like other things had passed me by!
These terms are often referred to when people are talking about Autism, or Autism Spectrum Disorders (ASD) or as some like to refer: Autistic Spectrum Conditions (ASC.) However the terms also refer to:
“ADHD/ADD, dyslexia, bipolarity and other neurotypes as a natural human variation.”
I therefore decided to create the ‘Celebrate Neurodiversity’ logo using the Neurodiversity infinity symbol. I am happy that this symbol displays rainbow colours, as it represents the spectrum of ASD and diversity, as I definitely know that no people with Autism are the same. And we are also big fans of rainbows in our house, and what they represent – after the rain, there is sun and then a rainbow 🙂 It celebrates the positives of our diversity, what some people may view as a tragedy, I see as a celebration of:
A “neurological diversity as inherently pathological, instead asserting that neurological differences should be recognized and respected as a social category on a par with gender, ethnicity, sexual orientation, or disability status.”
“view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.”
I don’t agree that Autism is ’caused’ by vaccines, or bad parenting, I do not believe that my daughter will “grow out of it” and I know this because at 34 I’ve never grown out of it, just learned how to cope and how to accept myself for who I am. I also don’t believe that being an “anxious mum,” makes any difference! My anxiety is only made worse by people who don’t believe what I am trying to get across!
A fellow SEND blogger wrote a post for the Firefly Community about all of the things that parents have been told about their children, it’s very opening and I can relate to many of them, sadly.
“The “acceptance perspective” endorsed by the movement is a view that autism is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome.Advocates of this perspective believe that autism is a unique way of being that should be validated, supported and appreciated rather than shunned, discriminated against or eliminated. They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated.”
We want to celebrate our Neurodiverse family, even though there are many challenges, we are all about the positives 🙂
I have noticed her sensory seeking since the age of 18 months, she has SPD (Sensory Processing Disorder) and Hypermobility, and currently being assessed under the ‘Umbrella Pathway’ which is the ASD assessment for the area where we live. Lou also displays traits of ADHD and PDA (Pathological Demand Avoidance,) although I do wonder if the ADHD traits we see are all part of her SPD Sensory seeking, but her Paediatrician has said that they will assess her for ADHD when she is 6, so a year to wait! I have no idea how long the ASD assessment process will take, someone told me approximately 2 years! But we shall see! It is more difficult in Lou’s case as she ‘masks’ her difficulties at school, bottles up her frustrations and sensory overloads all day, and then ‘explodes’ like a shaken up bottle of pop once she reaches home. I am hearing more examples of how Lou is struggling more now the pressure has upped in her first year at school, she thrives on routine, but likes to do things on her own terms, so the free-flow system that Early Years classrooms allow, do suit her best. I do wonder how she will cope with the challenges of a year 1 classroom and SATS eventually! Lou is showing more anxieties now, she requires ‘fiddle toys’ to concentrate, and she’s been picking at her nails which require medical treatment.
Lou has had genetic bloods taken and in August 2016, we were told that she has a genetic anomaly of “unknown significance.” In October 2016 both myself and Lou’s daddy also had genetic bloods to check if this anomaly is genetic or unique to Lou, the bloods were sent away to Birmingham and we’re still waiting for the results.
Lou is funny, she likes to make people laugh, she is fantastic with numbers and her writing is coming along, she is the master of ‘messy play’ and sensory seeking! Her memory is fantastic and loves learning facts, her current favourite TV programme is called ‘Do you know’ (CBeebies) where children can find out about how things are made and how things work. She has a huge special interest in ‘Shopkins’ and the ‘Trolls’ from the movie.
Moo is still so young, I’ve been noticing some sensory issues and seeking with her for a few months now but I’ve been worried about sharing them as I had such a negative experience with Lou, in terms of my parenting skills being blamed for her difficulties. However, I’ve now contacted the same health professional that knows all about Lou’s history as I am aware that the earlier the support is put into place the better.
Lou went to our local hospital’s children’s clinic this week and it was found that she is hyper mobile just like her sister. We have been noticing since she starting walking at 15 months, that she walks with a slight bend to her legs and her left foot turns in and she is tripping over frequently. She has now been referred to Orthotics.
Moo is already such an oral seeker, she wants to chew on items constantly, she gets very distressed when she cannot have access to something to chew, she will put items such as mud, sand, stones, crayons, and Play Dough into her mouth to chew on. We have to ensure that Lou’s Lego and beloved ‘Shopkins’ are put out of reach! She also likes to wear her coat and often hat indoors for hours, she thrives on constant contact, especially to me – which is the opposite to her sister! One of the most recent signs I’ve noticed is that Moo will place her hands over her ears when the hairdryer or Hoover are turned on and we recently went to the supermarket and she heard a high pitch beeping sound and got distressed and held her hands over her ears also. If her older sister is screaming, Moo will shake and literally climbs up my leg for comfort.
Moo is also naturally funny, she is very loving and thrives on cuddles, she will place my hand onto her tummy to squeeze her for comfort, her speech is coming on a treat and we adore her curly red hair! She definitely is a girl who knows what she wants! Moo loves ‘Bing’ Bunny from CBeebies, Teletubbies and is a huge fan of ‘Mr Tumble,’ she is now using a few Makaton signs from watching.
Mummy (34) is the one who sat in a talk on Autism in September 2016 and thought “that’s me!” I used to feel ashamed of my differences, I always knew I wasn’t the same as most people around me, but I never quite knew why! I would describe myself now as ‘quirky’ but for most of my childhood and teenage years, thought myself weird and strange. I have masked my difficulties for my whole life and suddenly thought “I’m exhausted, I can’t do this anymore” so I went to my GP and now I have my Adult Assessment for Asperger’s in April 2017. I’ve been given so many different labels over the years so having a diagnosis would finally give me the release of all those questions over all those years!
My biggest struggle at the moment is socially, I go through patches where I thrive and organise and arrange so much as I feel able to, then after as the pressure ups, or if I take on too much, I then withdraw and find it hard to cope in social situations and worry that people will find me odd and strange. I still have ‘sensory overloads’ especially in public and have to hold it all in in fear of embarrassment, if supermarkets are busy, loud and lights are bright and I feel closed in, I will forget what I’m in there for and head for the nearest exit! I am also still claustrophobic, if I can’t see a clear entrance or exit in a building I will panic, especially if someone is blocking my path and talking at me! Sensory overloads result in what look like ‘panic attacks’ for me these days and I usually save them up until I get home and explode! Just like Lou!
For Autism Awareness The National Autistic Society have realised the following video: Make it Stop
It is such a good insight into how you feel if you are experiencing a sensory overload.
Self confidence I’ve always struggled with so it’s difficult for me to explain what I’m good at! But here goes! I thrive on craft and art work, I love to express myself through creativity and writing, I can’t always express my feelings out loud but I can write it all down! I love my children and before they were born I struggled to understand how to have empathy for others, they have taught me so much ! I love being around children, I’ve always identified with children who have additional needs as I now have trained myself to think about how they may be feeling, especially if they have sensory issues, e.g if I see a child is distressed and cannot see why I will always think beyond and ask “is a label scratching you?” Some people may describe my methods as too empathic as I’ve heard so many times “your too soft” or “your wrapping them up in cotton wool,” but I challenge these people to put themselves in my head and see what I see and feel what I feel in terms of sensory issues, it has a huge effect on daily functioning! I do not see children as ‘naughty’ I’ve always identified that all behaviour has a reason and you just need to think ‘out of the box’ and not try to force children to conform! I know that not everyone will agree with me and I often clash with people! I like to help other people, something that I’ve also taught myself over time and enjoy doing 🙂
Daddy was educated in a SEN school in Somerset, in today’s terms (not the awful 1980s,) he would have been described as having GDD (Global Developmental Delay,) Learning Difficulties and severe Dyslexia. He was seen by many professionals and also had to wear supports for walking until past the age of 5. Professionals believed that he would never be able to lead an independent life, but he has been able to secure employment and now has a family of his own.
Daddy teaches the girls all the practical stuff, it takes Mummy hours to put together a flat pack bread bin ! Daddy is the practical thinker, yet mummy looks too much behind the theory of stuff! Lou loves rough and tumble play so daddy is the best for this! Mummy hates it! Daddy makes us laugh so much!
Not everyone understands our Neurodiverse family, I’m not unaware that people talk about us and comment on us, people may even joke about us 😦
But we have to just concentrate on the 4 of us and try to block out any negative views or negativity, we are very lucky to have some lovely, supportive friends and family 🙂
We are trying out absolute best, we can’t do anymore than that ~ everybody deserves to be happy !
Thanks for reading 🙂
I just thought I’d also add a fantastic piece of writing I’ve found this week from Faithmummy :
There are sometimes when I feel like I would like to lift my brain out and gladly have it replaced with another…
I’m completely guilty of thinking I can take on the world when I’m having good run in terms of feeling confident, however when the pressure starts to pile up my brain simply cannot take it and I feel like it’s a volcano about to erupt. This is how I think that my own Lou feels when she experiences meltdowns or ‘Sensory Overloads’ we have brains that can only really process 1 or 2 things at a time and it will explode if too overloaded or pressured.
A huge rule in my household is that we don’t shout, we want to be calm in front of Lou, to provide a calming environment and model relaxation techniques to help her cope with her brain overloads, when it all just gets too much…
…But this morning I forgot this, this morning I was feeling pressured, I was worried about Moo who isn’t well at the moment and because my children are my priority I am behind in terms of my paperwork, if I don’t have a plan I get confused, I stumble and I waffle it’s like Lou would feel without her visual timetable, Moo was screaming as she wasn’t really wanting to go out into the cold when not well, and I didn’t really want to take her out but Lou needed to get to school. Whilst refusing to put on her school shoes, get her coat on and have her hair tied up I realised that Lou had a load of toothpaste at the bottom of her trouser legs of all places, so with the screaming and refusing still going on and now the dampening on the trousers, something clicked in my head, I forgot to stay calm, I forgot to not give Lou direct demands, and I lost it 😦 I shouted 😦
My ‘head was red’ as Lou would call it.
Enough is enough…
… something needs to give, I need to except that I am a mummy first and foremost, my 2 young and lively children need their Mummy to be on top form, they don’t need a nervous, paranoid and anxious mess. They don’t need a Mummy who finds it necessary to clean the house everyday as she believes that it is too messy, which is clearly a coping mechanism, that I have control over something and this is diverting my stress out.
They need and they want a Mummy that plays with them and doesn’t feel that she should always be doing something else.
Today Mummy took a step back and said enough is enough, because in order to be strong for my 2 children, I need to look after myself…
This is an idea of why my brain currently feels like too much is going on…
~ Lou’s ‘Umberella Pathway’ assessment process has begun – an assessment for ASD.
~ It’s parents evening tonight – lots of listening for me that I find difficult to take it, worrying that everything is ok with Lou.
~ Paperwork for my music sessions and battling an anxiety of ‘performing’ in front of a crowd of people.’ (This didn’t effect me 6 months ago.)
~ Ongoing pain in my back – since July 2016, to which I’ve now said that I need to seek advice from a private Physio, a constant worry that it will effect my future job prospects.
~ My own adult assessment – being referred back in December ’16 and not hearing anything since.
~ Tiles keep falling off my bathroom wall and the agency I pay rent to don’t seem bothered ! My oven won’t work due to it tripping the electrics every time it is turned on!
~ A constant worry that I’ve upset someone, I’ve said/done something wrong in a social situation, I’ve offended anyone, a wish that I could read people but my brain is wired in such a way that I find people and social situations hard to read.
~ A battle inside my head everyday in terms of Lou, for example, she coped ever so well during a recent birthday party, (I’m so pleased she enjoyed it,) apart from a sudden unexpected sound of bubble wrapping popping, but soon recovered. So I sit there thinking, “she’s fine,” maybe we’ll see a change, yet once reaching home she had a huge meltdown, as she’d obviously held in her overloads during the party.
For the time being I’m going to be a Mummy and carry on blogging when my girls are tucked up in bed, I cannot lose my blog, it is my therapy where I write so that thoughts and worries no longer bounce around in my head, people will either read these posts or not, they may help someone or not, but I will carry on doing them as blogging doesn’t make me stressed 🙂
To some people, these things that are going on in my brain may see trivial, some may say “she’s got nothing to stress about,” but as my mum has always told me: “You are you, you are not other people, and other people cope with things differently.”
Part of my problem is that I find it difficult to cope with a lot going on and have such a low ability to cope with pain, and stress, which I think is something to do with me being such a highly sensitive individual, I am learning to tell myself that every single person has a different level of coping and trying to tell myself not to be afraid of admitting that I’m struggling…
… I simply cannot pretend or mask to be someone I’m not…
… I cannot help the way my brain is wired no matter how much I pretend, or practice or copy others.