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 🙂
I’ve lost my motivation lately, with so much going on like the Easter holidays, going away and then coming back 3 days early due to Lou having Chicken Pox! And now wondering if and when Moo will get them!
I’m struggling to find my next direction, Moo is going to take a bit longer than I first thought to settle into an early years setting and we’ve had a lot going on lately in terms of her being referred to the Paediatrician for her sensory issues and finding out that she too has Hypermobility and has been referred for Orthotic supports. I want to work for me, to get the old me back and give me a focus, but I have had to accept that my children, especially Moo, need me at home at the moment and then there’s the results of my initial Adult ASD assessment still to come and I’m confused as to whether I should return to the only career I’ve known for 13 years or try a new direction! In an ideal world I’d love to use the skills in researching, writing, blogging and social media that I’ve developed over the last year but finding it a struggle to find anything relevant.
Today (23/04/17) I was inspired by a friend who ran the London Marathon to raise funds for Acorns Children’s Hospice, who have helped her family a great deal. I got emotional watching the coverage to think about what an amazing achievement it is to do something like this. I was also delighted to hear that this year’s charity of the year for the London Marathon was ‘Heads Together,’ a charity that was founded by the Duke and Dutchess of Cambridge and Prince Harry.
Their aim is to end the stigma attached to mental health, which is something that I’m so pleased about. For many years I felt ashamed of having anxiety and depression, I didn’t openly talk about and try to hide how I was feeling, even from those closest to me. Even today I sometimes find that if I openly talk about mental health issues that people still tend to change the subject and I can tell (after years of teaching myself,) that this isn’t something that the person is comfortable talking about.
This week I watched a BBC programme called ‘Mind over Marathon,’ and it reliterated to me that there are so many benefits of exercise for mental health issues, exercise is also one of the most effective ways to improve your mental health.
“Regular exercise can have a profoundly positive impact on depression, anxiety, ADHD, and more. It also relieves stress, improves memory, helps you sleep better, and boosts overall mood.”
I’ve been struggling with my weight since 2009, when I had a severe bout of depression and ever since I took a certain sort of medication I’ve been struggling, after never going above a size 14 before the age of 27.
Since July ’16 I have been struggling with back pain and I’ve recently had physio sessions as it was found that my pelvis had been out of line since having Moo in March 2015. I found it difficult to walk and therefore difficult to do any sort of exercise, I also struggle to find the time or money for gym sessions due to having 2 young children at home. I recently explained during my initial assessment for ASD that I often felt ‘silly’ doing exercise, this is probably due to being laughed at as a child, I was tall, un-coordinated and clumsy, I didn’t like looking silly or drawing attention to myself and therefore I’d avoid situations that didn’t make me feel comfortable. As an adult I haven’t stepped foot in a gym since my last experience where a gym member commented to the gym instructor: “you’ve got your work cut of there,” implying about myself which really hurt me and I never went back.
I’m very much in the “I don’t care what people think” mode at the moment so I decided to download a walking app on my phone and I took a picture of how I currently look as a motivational tool, (as I hate having my photo taken!)
We’re lucky to live in a village in the countryside where there are plenty of public right-of-way paths, so I set out after my girls were in bed and it was lucky that it was a lovely sunny evening.
When you have sights such as these it’s a fantastic motivation:
So I’m planning to try and get a walk in every evening now it’s lighter and keeping a track of my time so I can try and beat this the next day!
I felt so motivated when I returned home after my walk and I’m hoping that it does eventually turn into a bit of a run! I don’t think I’ll be running the London Marathon any time soon, but I do hope to try and be involved with some sort of sponsored event next year.
When I heard that the April theme for the Family Fund blog was ‘Happiness’ I was delighted as I really feel
that we’ve turned a corner in our household recently, it has been a year since my daughter, Lou, (5) was
diagnosed with Sensory Processing Disorder (SPD) and Hypermobility, and she is currently at the start of an
ASD assessment. When we first received the diagnosis, it was a tendency to look at what my daughter
can’t do. Gradually over the past year I have learned to ‘tune-in’ to my daughter’s interests and in turn, it has helped us as a family to really focus on what makes her happy, and learning to embrace her strengths,
and there are so many!
Via researching SPD I learnt the difference between ‘sensory seeking’ and ‘sensory avoiding.’ I soon
realised that Lou, on-the-whole, is a huge sensory seeker and does avoid in some circumstances, e.g. she dislikes sudden, unexpected and loud noises. Lou is constantly seeking sensory input which can make her appear ‘hyperactive,’ and has an inability to sit still. But via offering a ‘Sensory Diet’ at home, it allows Lou to get her daily sensory stimuli and we do notice improvements in terms of her
concentration and attention if her sensory seeking needs are met. (I have written a separate post about a ‘Sensory Diet’) here:
From my own experience in working with Early Years children I picked up many ideas of the sort of
materials and equipment for messy play, along with many ideas. I soon found that Lou thrived on this kind of activity so I went with this. From the age of 18 months she enjoyed the feel of running water into her hands, and if I put out a tray with sand and washing-up liquid in to make ‘Soapy Foam,’ she will usually
tip out the mixture onto the floor and explore the textures with her hands and her feet.
Play dough is a huge favourite with Lou, especially when we make home-made sensory dough that has
essences added such as vanilla, or dough that has been mixed with glitter or herbs and spices, Lavender was a huge favourite. Lou tends to ask for play dough every day, especially after school, she will hum to
herself whilst she’s squeezing and manipulating the dough, which I’ve come to realise is a sign of ‘self- regulation’ and that she’s receiving the sensory input that she has been seeking. Any activities that involve
paint do not stay on the brush as she absolutely loves to cover her whole hands in the paint and slide her hands across the paper, or table!
Sensory toys and equipment
We have created a specific sensory area for Lou, which she has named her ‘calm zone.’ The sensory toys
and equipment have a very calming effect on her, this includes:
• Bubble tube, rainbow projector, stars and moon projector,
• Coloured gel-droppers,
• Light-up sensory balls,
• Home-made sensory bottles that we filled and then sealed that can be shaken,
Vibrating neck massager
• ‘Treasure basket’ with everyday objects that includes a variety of textures,
• Musical instruments,
• A ‘Peanut’ ball, like a Yoga ball that is peanut shaped,
• ‘fidget’ toys such as a giant ‘Tangle.’
• Soft toys and books, soft rug and blankets,
• Fairy lights.
Lou has free access to this area throughout the day and our hope is to help her recognise when she
needs to take herself off to the area to self-regulate before she gets to the point of a ‘sensory overload.’
There is also other sensory equipment that we have found helps to calm Lou, and in turn makes her
happy, this includes our most recent addition of a ‘Weighted blanket,’ that includes a pattern of her favourite character – ‘Princess Poppy’ (From the Trolls movie.) Lou has loved deep pressure since she
was a newborn and only settled if she was swaddled. The deep pressure helps to calm her if she’s anxious
or has had a ‘sensory overload,’ sometimes she will just like the comfort of the feel and weight of the blanket.
Lou has always been a huge lover of ‘White Noise,’ when she was a baby I had to download a ‘White
Noise’ app onto my mobile phone, with the sounds of a Hairdryer or Hoover, sometimes she prefers the
feel of the warm air coming from the Hoover, and not so keen on the noise, and therefore puts her ear
Lou is a huge outdoors girl! She gets so much out of being in the garden or out at the park, she gets so
much from the ‘Forest School’ sessions that her Pre-School provided and that her current school provides
once a week. Lou is calmer and happier outdoors, this environment provides her with so much sensory
seeking input and stimuli, she makes a bee-line at our local park for the ‘Pendulum Swing,’ and likes to spin
and hold her head back to gain sensory input. She is happiest when covered in mud, the messier the
better, and is happy to climb and jump off equipment, she really has no fear!
‘Special Interests’ make Lou happy.
Lou has certain interests that engage and motivate her and make her very happy. At the moment, she
loves to collect ‘Shopkins’ figures, she knows all of their names and arranges them into groups, she can tell
people facts about the various characters. Lou will watch ‘Toy Reviews’ on the tablet and then do her
own toy review with her own toys! Even putting on an American accent and saying “Hey guys, today we’re
reviewing…” Lou tends to have a film that she is interested in and will watch the same film over and
over and then will change and repeat with another film, she started watching the film ‘Rio,’ then moved
onto ‘Frozen,’ and now the ‘Trolls’ movie. Currently we are all about the Trolls, she has the movie, the
soundtrack, T-Shirts, Pyjamas, sticker books, plastic figures, watch, pencils, you name it, she has it! I recently tried to play Lou some classical music to help calm her, but this didn’t work, until I played the
Trolls main theme tune, and she quickly calmed down after a sensory overload! I have sometimes experienced times when children are stopped from talking about their special interests but I find from experience, that it is important to embrace children’s special interests as you can really reach them on their own level.
In the past few months Lou’s love for Lego has developed, she now has several Lego sets and I realised recently that she gets so much from putting the Lego bricks together as the ‘click’ in itself gives sensory feedback.
Lining things up and numbers make Amber happy.
This is something that we’ve recently noticed, lining up the smaller characters that Lou collects, especially toys, but also items like household coasters, bathroom products and foam floor mats. This process we have found helps Lou to self-regulate, especially after a busy day at school. Lining up allows her to gain back some control, she likes to see objects and toys all in line, neat and tidy and this makes her feel happy. Lou is also a huge numbers fan, she can recognise 2-digit numbers now on sight, especially the numbers of the stickers for her Trolls sticker book! Lou also thrives in mathematical activities that include shape and repeating patterns.
I know that there are so many challenges to having a child with additional needs, we still have some really challenging days, but around a year ago I felt completely lost, until I started looking at the many positives that my child has, rather than focusing on what she cannot do, and learnt to embrace these positives, and in turn learnt more about my child and about myself. My love has grown for messy and sensory play with my child and I am now completing an online course in Play Therapy.
My girl is wonderfully quirky, and loves to make people laugh, she naturally makes people around her happy, and seeing her happy warms my heart.
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 :