Special Interests 

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Whist completing my first assignment for the distance learning course I am doing on ‘Understanding Autism,’ I was reminded of the term ‘special interests,’ some may refer to this as ‘obsessions,’ but I prefer special interests.

“Autistic people often have an intense and passionate level of focus on things of interest.”

From: Autism Wiki

One of the saddest things I’ve ever heard was a child being told that they should stop talking about their special interest. As a person who had special interest themselves as a child, I do my best to engage with my children’s special interests.

“Parents are encouraged to support their child’s interests.[6] While special interests may seem strange or random to outsiders, they are incredibly meaningful to the child. They provide a source of recreation, allow the child to develop competence in a certain area, provide a safe haven during times of stress which assists in avoiding meltdowns and sensory overloads, and improve self esteem.”

From: Wiki Special Interests

I wanted to sit down next to this child and say: “I’m listening, you tell me about it.”

When I recently attended ‘The Autism Show’ at the Birmgham NEC, I heard Lana Grant speak on the topic of ‘Girls with Autism,’ Lana founded the Facebook group called ‘Mums on the Spectrum,’ and has written her own book called ‘From Here to Maternity – Pregnancy and Motherhood on the Autism Spectrum.’ Lana spoke about the ‘special interests’ of Autistic girls and that these particular interests may be similar to those of a neurotypical girl, e.g. horses, dolls, princesses.

Some people refer to special interests as ‘obsessions,’ personally I prefer the term special interests, some may tend to look on special interests as a negative thing but I see them as something that makes people on the autistic spectrum happy and focused. Some people may even go on to use their knowledge and passion for their special interest as a career. For example, Alan Gardner, a garden designer who uses his passion for patterns and shapes and incorporates into his garden designs. He has a TV programme called ‘The Autistic Gardener.’

Lots of people collect things and have particular hobbies, however, my own description of a special interest is something that is difficult to stop thinking about and something that you like to talk about in great detail. Some people like to hear what you are describing and some people don’t! For me if I saw an item that I was collecting I would just have to have it and I couldn’t walk out of a shop until I had bought it, I will describe my collections in more detail later on. Sometimes, this can be difficult if you are spending a great deal of money on your special interest, such as my interest in craft materials for scrapbooking and card making, I have 100s of pounds worth of materials and I found I spend the majority of my money pre-children on these items that are now sat upstairs and hidden away in boxes as I just don’t get the time to sit and do crafting these days, with looking after 2 lively children!

I recently wrote down over 30 years of my own special interests and there has been many, some have lasted from my earliest memory from the age of 3 until the present day, I had an imaginary friend, a fairy called Tinkerbelle when I was 3 years old, I collected fairy statues and items until the present day, where I have restrained myself from buying anything else, but I have kept a few of my favourite figures on display at home and I have a hand-drawn framed Tinkerbelle from Disney Land Florida. A great deal of my special interests may have been shared by other young girls or teenage girls, but there has been more obscure ones, such as my love of smelling paper! I have always loved the smell of books and magazine, glossy magazines are my favourites, I also love the smell of libraries with all those books! I still do this today and my favourite thing to smell is the Next Directory Catalogue!! I love the smell of new things in general, especially new clothes before they have been worn, there was a time when I had a slight obsession (and it did turn into an obsession,) with buying new clothes from Primark, a cheaper range shop, but still not great for the bank balance! And in contrast these days I don’t buy clothes for myself, it is now for my 2 girls! Another special interest that spanned many years was collecting dolls, it started with Barbie and Sindy dolls, and I had 100s and then around the age of 12 I started to collect Porcelain dolls and these also went into the 100s, I had to clear some out and de-clutter once I had my children so I only have kept 4 of my favourites.

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Here is my timeline of special interests spanning 30 years: (That I haven’t already discussed.)

  • ‘Polly Pockets’ small collectable characters inside their cases for their homes. My mum kept these and Lou now plays with them when she visits my parent’s house!
  • From age 8 – Dolphins, watched films, collected ornaments, books, learnt facts about them.
  • Trolls! Ironically the original late 80s/early 90s Trolls figures – small, large, various themes and makes.
  • When the film ‘Jurassic Park’ first came out in 1993, I was 11 and interested to find out about why the Dinosaurs became instinct, so I researched via enclopedias and leant many dinosaur names. This is where my love of all ‘facts’ began, which carries on to the present day. I have collected many Guinness Book of Records and use Wikipeadia and Google a lot to find out things. I also have to know if I’ve seen a character from a TV programme from somewhere else and I will have to find out or it would bug me!
  • At around the age of 14 I started to collect stamps, I have no idea where this collection went, but I had a lot! I also became interested in collecting Fifa Football stickers for the sticker books and Match football magazines, even though I couldn’t play football, I was awful in defence! I had a season ticket for my dad’s favourite team and became interested. I still, to this day, do not understand the off-side rule!
  • I can’t quite remember which was my first pin badge, but I collected 100s and placed them onto 1 particular bag, when visiting somewhere for the fist time, I couldn’t leave without buying a pin badge to represent the place I had visited.
  • Whilst at University I discovered the book ‘Harry Potter and the Philosopher’s stone,’ I read the book to a class of year 4 children and then went and bought the book myself. I couldn’t put any of the books down and saw all the films at the cinema when they came out and I have the whole DVD collection. Lou isn’t ready to watch the first film just yet, she watched some but isn’t keen on ‘Fluffy’ the 3-headed dog!
  • I got into collecting precious stones after I read about ‘Crystal healing,’ I bought books and magazine subscriptions, my grandmother’s name is Ruby and this is why I named our first child also after a precious stone.
  • I watched the ‘Lord of the Rings,’ films, read the books, designed costumes.
  • I’ve loved musicals since around the age of 4/5 when my nan first introduced me to ‘The Sound of Music,’ although very quiet as a child, I liked to tape myself singing to songs from musicals such as Grease and Evita, but would be mortified if anyone else every played my tapes! I joined the school orchestra at 9 and choir at 14, also playing the flute. There is something that stirs my emotions when I hear the songs from musicals, when I first watched Les Miserables I was very emotionally overcome after hearing the songs for many years previously. My passion for music has carried on until the present day, I am calmed by classical music and I became a self employed music lesson leader for early years children in September 2016.
  • My most recent special interests are, programmes such as ‘Game of Thrones,’ I have watched seasons 1 to 5 through beginning to end now 6 times, and season 6 though twice. Certain amazing episodes I have watched 3 times in a row! The music, the costumes, the fantasy – dragons, Direwolves, giants, Children of the Forest, the history – something else that I’ve always been interested in. I have read extracts from the Game of Thrones Wiki and if I see a character from GOT in another programme I will immediately recognise them. I was very close to calling my 2nd child Arya, after the GOT character ‘Arya Stark,’ one of my favourite characters, she was also almost called ‘Daenerys,’ after my other favourite character! Both these being very strong and fierce female characters. My youngest daughter is actually named after the actress that plays Arya Stark!
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Lou aged 4, “I’m reading your story mummy.” (A good job she couldn’t read at this point!)
  • Blogging! And writing! I have always loved writing, I found the physical formation of letters and joining up words very difficult in school, I had intervention lessons to help, It wasn’t until I went into teaching training that I actually learnt how to properly form some letters! I wrote my first book at 11 years old which is collecting dust somewhere! It was when I discovered word processing on computers that my love of writing grew even more, I could get what I wanted to write out without worrying too much about the spelling or formation of my handwriting. I used to write essays and my sixth form tutor would refer to them as ‘War and Peace,’ which I didn’t actually understanding the meaning of until a few years ago!!! I enjoy the feeling of putting pen to paper and also the sensory feedback of typing on a computer keyboard, the sound and the click! I started my blog in May 2016 and I hadn’t even heard of blogging before! I find that writing is my therapy to get things out of my head, from repeatedly swimming in my thoughts! Whether or not people read my blogs doesn’t bother me too much as it’s more like therapy for myself. So far I have written over 100 posts. I also love social media, I like to interact with people, especially like-minded, and I don’t have the anxiety of actually talking to someone face-to-face. Sometimes I can become obsessed with social media and I can also get jealous sometimes that my life isn’t as rosy as other people’s so there are times when I do have to give myself ‘time out’ from social media.

 

Enough about me! These are my children’s current interests:

Moo is currently 2, it’s so early to tell if she’ll develop particular special interests but I can already see that she is fascinated by shoes! She gets all of the shoes from the shoe rack every morning and tries them on, she also shows everyone we meet her shoes, and looks at the shoes that people are wearing when we are out and about. She can also tell me along the washing line which particular item of clothing belongs to which member of the family, “Daddy’s, Mummy’s….”

Moo is also into ‘Bing’ Bunny from CBeebies, she will now say ‘Bing’ loudly when she would like to watch it, and if I’m not quick enough to put it on she’ll shout “Bing, Bing!” Moo has also recently got into trains and tractors, she loves wheels. She enjoys our weekly train journeys and gets very excited when she can see the train pulling into the station!

Lou’s special interests are already more defined, I first noticed her love of water from 18 months old (even though to this day she despises having her hair washed!) She used to stand at taps and let the water run through her fingers and along her arms, she would like the feel and sensory feedback of pushing her fingers up against the taps, resulting in bathrooms flooding at her childcare setting! Lou is interested in and gets very absorbed in any sensory, or messy play experiences, textured paint, bubble mixture, even if its food and not a particular sensory activity, for example, she will tip out yogurt onto the table and move it around with her hands in circular motion and tip out jelly onto the floor and move it around with her feet! She enjoys feeling the texture of various materials with her feet.

Lou got swept away with the Frozen film phenomenon at the age of 3, books, singing the songs from the soundtrack, watching the film many times in a row, many days on end! She had the character dresses for ‘Anna’ and ‘Elsa,’ and even though her interests have moved on since, she still likes to put on her ‘Anna dress,’ and will say to Moo: “You can be Queen Elsa and I’ll be Princess Anna.” She would also only answer to her name as ‘Princess Anna’ at one point! Lou had to have absolutely EVERYTHING Frozen, dresses, T-shirts, underwear, bags, purse, pencil case, colouring books, dolls, you name it!

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From the age of 4 onwards, Lou discovered ‘You Tube Kids,’ she started by watching videos of ‘Surprise Eggs,’ with someone unwrapping an egg with a mixture of toys inside, with just the crackling sound of the unwrapping, someone’s hands and a rather screechy voice! These days Lou prefers to watch videos from children performing at ‘America’s Got Talent,’ with her favourite being that of a girl singing ‘Roar’ by Katy Perry, which she watches many times in a row, every…single…day! I have noticed that Lou does pronounce certain words with an American accent. From the age of 5, and current special interests are the ‘Trolls’ movie and ‘Shopkins,’ Lou collects the small figures and enjoys lining them up and ordering them. Rather like I used to do with ‘Polly Pocket,’ figures, and indeed, the original 1980s/1990s Trolls! Lou has Trolls everything! Just like she did with the Frozen craze. She also amazes me with how she can name every ‘Shopkins’ character and there are 100s! Am I tempted to re-collect Trolls figures? Yes very, especially after I needed to de-clutter before moving house around 3 years ago and I gave my collection of 100s of Trolls figures to a charity shop and then I see them going for ridiculous amounts on eBay! Whoops! But I will live my special interests like this now through my children!

Lou has been fascinated by time, she could tell me at 3 and a half years old that it was “7 O’clock.” Lou likes the days of the week, months of the year, dates, and times, she has her own ‘wall of organisation,’ at home displays days, and daily visual timetables, as she likes to know exactly what is going on and when.

 

I love hearing about the ‘Special Interests,’ of others, I recently asked some fellow SEND Bloggers and people I know who gave me permission to share their special interests.

 

Someone’s Mum has a son, aged 4 who likes Queen, Billy Joel and the Beatles, she wrote this fantastic post where she also mentions her son’s love of Pianos. Read this here: the-things-they-love-and-the-things-we-do-2/

 

First Time Valley Mam has a son, Z, who loves collecting rubber ducks, the lovely ones with patterns on, he has 100s.

 

Rainbows are too beautiful has written a post about her son’s love of Formula 1, read this here: whose-birthday-is-it-today

 

Faithmummy told me how her son, Issac (8) loves lifts and hand dryers and also Bing Bunny. He takes Bing everywhere, and I know that my Moo would love his T-Shirt! She also told me how her daughter, Naomi (also 8,) enjoys Thomas the Tank Engine.

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Issac (8) with his Bing bunny, photo with permission from http://www.faithmummy.wordpress.com

 

Our Autism Blog told me that her daughter enjoys soft toys and Pokémon.

 

Autism Mumma has a son, T who is into Football and a daughter, D, who likes Bradley Walsh and looking at pictures of My Little Pony and drawing.

 

Riko’s blog, PDA and more who’s eldest child has always been interested in Marine Biology.

 

A very good friend of mine has 2 lovely children, Jessica (9) absolutely loves Ladybirds and has since the age of 2 and a half, she also loves ‘Animal Jam’ which is an illustrated game that is partnered with National Geographic. Jessica’s brother, Harry (6) is into ‘information,’ and London, especially Big Ben.

 

I love reading and talking about special interests, everyone is different, we all have different interest and I like to hear about them 😊

Spectrum Sunday

What worries me 


I’ve read a lot of articles and posts over the past year, most of which are helpful and informative, but once in a while I come across something that worries me and I have to avoid reading these type of articles to prevent further ‘overthinking.’  

I recent read such as article that talked about how Mothers on the Autistic Spectrum are more likely to be accused of fabricating their child’s difficulties. 

“The term used is ‘Fabricated and Induced Illness’ (FII), indicating that parents are thought to be embellishing a child’s symptoms because of anxiety, or for attention or financial gain.” Source: https://www.autismeye.com/parents-accused-of-fabricated-illness/ 

One further aspect I read about was that children’s services were known to have been investigating cases of fabricating a child’s Autism without parents having the knowledge that this was actually happening. I was so upset to read this, the day after I went into ‘shut-down’ mode, wondering if I should even carry on with Lou’s referral to the Autism assessment team. As I have mentioned in previous posts, the passion that drives me to fight for support for my daughter is to prevent her from suffering with mental health difficulties as I have. I want her to be supported in any way possible, as early as possible. 

The problems we face as a family in getting certain messages across to the appropriate sources, is that Lou ‘masks’ her difficulties, except at home where she is most comfortable and with the people who she feels unconditionally love her, us – her parents. We recently discussed that only myself and Lou’s dad have seen the true extent to her anxieties, frustration and anger and full traits of Pathological Demand Avoidance (PDA.) In the past I have videoed her ‘sensory overloads’ or ‘meltdowns’ and voice recorded in hope to actually be believed that these events are happening. I hate to see my child struggle and I struggle to comprehend why anyone would want to believe that this could be ‘made-up.’ I’ve also mentioned in previous posts that even though we have a low income we are desperate for recognition and support for our child, not for financial gain, again this upset me to think that people may think this of parents. We do not qualify for DLA, and, at the moment I’m too exhausted to try again, just looking at the form gives me a huge headache! If our children need any extra equipment we’ve provided it as they’ve needed it, even if it meant we have to scrimp and save for it.  

As her mother, I can sense when she is uncomfortable about something in terms of sensory issues, for example, I can tell if an item of clothing is bothering her just by knowing that I also experience irritability with seams and labels in clothing. I can also tell from a certain look on both of my children’s faces if they are about to hit out or throw something. I have tuned into their triggers and to an outsider this may not be seen.  

Ironically, the day after I read the article on fabricating I received a letter from our local assessment team stating that they will be sending out a professional from their Complex Communication Needs (CCN) Team to assess Lou in school. For this I am grateful that we have been listened to, but it also puts the doubt in my mind that they will actually see Lou’s full extent of traits in this environment, I can only hope that my views as a parent, and closest person to Lou are taken into account and believed.  

My next question for myself will come once we receive news if Lou will be kept on the assessment path or discharged, I hate to think of things too far before they happen, but I’ve made a mental note to myself not to appeal the decision made if it means that Lou is discharged from the service. And do I then use the pot of money that I’m continually saving for a Private Diagnosis or just leave it, but then have the worry of watching my child suffer further as the pressure continues to rise throughout school? There are so many people out there who cannot fund a private diagnosis so should why should the conventional route be this hard? Will girls who mask, and suffer in silence, such as I did as a child in the 1980s and 1990s, produce another generation of ‘Lost Girls,’ https://spectrumnews.org/features/deep-dive/the-lost-girls/  

I have, until recently, held back concerns I had regarding my youngest child’s sensory issues, I believed that it would be thought that if both children were presenting with difficulties, then it must be my parenting skills, even though the sensory issues she is displaying are different to those of her sister’s, such as wanting to chew and eat inedible objects such as sand, mud, stone and chalk. We recently found out that Moo is also Hypermobile, she has been referred to Orthotics and Physiotherapy and this being found has taught me that the sooner any difficulties are identified then we can hopefully try to gain support for her. After going through the system a 2nd time, I’m now more familiar with how things work and I’m hoping that things are put into place before Moo starts school. I’ve done things differently this time around, as I’m now more familiar with the services to access. I’m now taking Moo to a ‘Stay and Play’ session at a local Special Needs school, where I can ask the advice of staff. I have also contacted our local ‘Early Years Inclusion Team,’ at our local County Council and I have chosen an Early Year’s setting that I feel is the best place for Moo and where I feel there are good links with the local Special Needs school where an ‘outreach’ service is offered for those children who are identified to require this support. They also offer ‘split placements’ where a child can attend some sessions in a mainstream setting and the rest in the Special Needs School’s own Nursery. I found the staff here to be incredibly intuitive to spotting Moo’s triggers for identifying when she is about to hit out at other children, just from the look on her face! They also taught her a technique for placing her hands onto her knees when her hands go out to hit out.  

So for now I’ll just concentrate on what I’m doing, chasing up the appointments and test results and writing blog posts and updating my Facebook and Twitter blog pages and will try to put the worry of what other people think about me to the back of my mind.  

Thanks for reading 🙂 

Masking 


This morning a friend shared the following article with me: 

https://help4psychology.blogspoth.co.uk

‘Children who ‘mask’ or ‘camouflage’ their Autism.’ 

So much of this article relates to both my own and now my eldest child, Lou (5.) I was so grateful to my friend for sharing this as I’ve recently had ‘writers block,’ and whilst reading it sparked a whole blog post in my head! 

Here’s our experiences of ‘masking.’ 

Lou is now showing more signs of frustration via a refusal to do ‘work’ at school, on the whole she ‘complies’ and doesn’t display the ‘overloads’ or ‘meltdowns’ that we experience at home on a daily basis. It may be difficult for professionals to guage how a child can ‘switch’ it on and off and change so much and understand fully how a child can be so ‘Jekyll’ and ‘Hyde,’ but I’ve had first hand experience as I did exactly the same as a child, I can’t really remember even speaking at school, I followed the rules in fear of being ‘told off,’ and drawn attention to, I held in the frustrations and anger I felt all day, instead of punching the boy who called me names all day, I’d save it all up and then ‘explode’ at home. I was actually quite horrible to my mum particularly (so sorry mum!) The exact same thing that Lou does with me now! I would take it all out on my mum as she was the closest person to me. I could be winging away at her whilst walking down the street and if we turned a corner and saw someone else (someone we knew, or a stranger,) I’d immediately stop in fear (I think) of being rejected or thought of in a bad way. In fact, I still do this now, but it’s now directed at my partner, the person that I now ‘offload’ to the most, and no one else really gets to see that side of me. I have no idea why I do this, my brain just tells me to and it’s puzzling to me even at the age of 34! 

The quote from the article: ‘Children who ‘mask’ or ‘camouflage’ their Autism.’ About grown women in social situations rings so true to me: 

“I walk into the room and feel like people are looking at me.” 

“Everyone else seems to know what to do.” 

Source: https://help4psychology.blogspot.co.uk/2016/11/children-who-mask-or-camouflage-their.html?m=1

I also relate so much to the section that talks about when: 

“Friendships become much more complex.” 

“What is said is not always meant, girls talk behind each other’s backs and make nasty and sarcastic remarks.” 

“For a girl on the spectrum, this is unbelievably difficult to negotiate.” 

I can remember being around 13/14 years old (a time where I was struggling with eating,) and the girls who I was friends with at the time were messing around trying to trip each other up, one of them said towards me: “don’t trip her up, she’ll snap in half,” a comment that has resonated with me my whole life, some people may have laughed it off, and just forgotten about it, for a girl on the spectrum, this simply isn’t forgotten. 


I recently spoke about friendships during my adult ASC assessment, friendships for me have always been tricky, never really feeling like I ‘fit in,’ it’s only today that I’ve finally learnt what true, and respectful friendship means. I stuck to one particular friend for the majority of my school life, to feel safe, I literally didn’t know who else to go to and I feared so much that I’d end up with no friends at all and just end up on my own. The result of this was years of going along with someone who did and said things that I really didn’t agree with, but couldn’t speak out in fear of confrontation. If this person told me to do something, I literally did it, I was a puppet on their string. I watched this ‘friend’ sneak make-up in their bag/coat in shops without paying, and as a strict follower of rules I’d find this so wrong and I’d then panic incase it was thought that I was doing the same. This person was rude to people and aggressive, everything opposite to me, there were so many ‘awkward’ moments I lost count! As I got into adulthood I came across other people who were connected to this friend and they all talked behind each other’s backs, their main topic of conversation was to ‘slag’ each other off, I got so confused around who I could actually trust and I became extremely stressed and just felt so uncomfortable around these people. In the end a confrontation occurred and I was called ‘nasty’ I’d never fallen out with anyone in my life, I became so stressed that I had to cease all contact to avoid having a complete breakdown. So in fact, masking the fact that you get on with people, when you really don’t does lead to mental health difficulties. In reflection these sorts of friendships were ‘toxic,’ I feel liberated and so much better for finally ‘breaking free’ of someone who I’ve come to realise, that I was actually quite scared of. 


The quote: 

“So many parents report of not being believed or being accused of poor parenting when in fact they are trying the best for their children.” 

Source: https://help4psychology.blogspot.co.uk/2016/11/children-who-mask-or-camouflage-their.html?m=1

This has been the case for us now for over 3 years, as our child, on the whole, complies in an educational setting, how can we get professionals to realise that under the surface, she really is struggling and letting it all out in her safe, home environment? 

I have spoken to parents who have been accused of fabricating their child’s difficulties, and this makes me so upset as why would anyone actively want to make this up? I’ve even had the term ‘attachment disorder’ thrown at me as many other parents have. I’ve said this over and over again in many of my posts but all we want for our daughter is help and support, and I’m so passionate about this as I’m a prime example of what happens if girls on the spectrum slip through the net, and the result has been years and years of being misunderstood and various mental health difficulties, particularly from my teenager years onwards and it’s been heightened at times of great stress, such as relationship breakdowns. I do not want this for my child.

“The long term risks of not helping these children and young people are significant and real and many will go on to have relationship difficulties, problems holding down a job and significant mental health problems in adulthood.” 

Source: https://help4psychology.blogspot.co.uk/2016/11/children-who-mask-or-camouflage-their.html?m=1

And I completely agree with the closing statement: 

“PDA and less obvious forms of Autism are not a new phenomenon – we just need to get better at identifying them early.” 

Thanks for reading 🙂 

Spectrum Sunday

Update on my assessment journey


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 🙂 

Thanks for reading 🙂 

We’re not alone in our struggle…

​A few months ago I saw an article on the Redditch Advertiser website, where I read about fellow ‘warrior mum’ who was fighting a battle to prove her innocence after being accused of faking her son’s autism.” Source: Redditch Advertiser 24/08/16.

Here is the original article I read: 

www.redditchadvertiser.co.uk

This lady’s story really pulled at my heart strings and I read more via her own Website: 

http://breakfasttree.com/

I realised how much I could relate to this lady’s experiences and she inspired me to carry on fighting, even though it’s well and truly exhausting.

After a huge battle to get an NHS diagnosis Bernardette sought a private diagnosis for her 4 year old son. I love the following quote from her website: 

“YES we have a diagnosis.
YES it was precisely the issue that we suspected.
AND YES… WE THE PARENTS WERE ABSOLUTELY FCKING RIGHT.” 

Source: www.breakfasttree.com

A private diagnosis found that Bernardette’s son had Pathological Demand Avoidance (PDA) as part of an Autistic Spectrum Disorder (ASD) 

Bernadette explains that she hopes to make more people aware of PDA. To avoid other parents going through the same difficulties that her fanily has suffered. She explains PDA really well in this post:

http://breakfasttree.com/asdpda-explained

A few days ago I saw on Bernardette’s Facebook page that sheis holding an art and spoken word event, which aims to expose the true harm caused by authorities to families with ‘unseen disabilities’ at Bromsgrove’s Artrix on Slideslow Drive.”

The event, which is taking place in the Artrix gallery, will run from Wednesday, February 1 to Sunday, February 26.

Source: www.bromsgroveadvertiser.co.uk Bromsgrove Artrix

I was honoured to be approached by Bernadette who asked if I would like to include our story in the exhibition. I wrote quite a long passage! But I thought I’d share our most recent time line here, It really made me think – this is why I’m always feeling exhausted and I could look back on how much we’ve actually been through in a short space of time. 

Here’s the time line of events: 

On 16th March 2012 our first child was born via Emergency Caesarean Section after suffering meconium in the waters and a drop in her heart rate. It was an extremely scary time…

…Our current journey started when my daughter was 18 months old (September 2013,) when I noticed that she was distressed by sudden and unexpected noises and would scream, she would seek out anything related to water, and keep taps running until the bathroom at the nursery was flooded. She was extremely active and screamed and got angry – when I discussed this with anyone I was told “It’s the terrible 2’s come early,” or “she’ll grow out of it, but she didn’t. I was working full time, my daughter was attending a childminder’s and nursery, I just got on with things.

  • May-August 2015 – Health Visitor wrote in a report questioning whether I had bonded with my child from birth – to which I said: “Of course we bonded – she’s my world – I think about her before myself everyday.” I asked our Health Visitor’s advice regarding her behaviour, she replied: “Well you know more about childcare than me, you’ve been in the job longer.” A few weeks later I saw the Health Visitor outside the GP’s surgery and she asked my daughter: “have you been naughty today? This professional was supposed to be supporting me in my darkest hour – my child’s behaviour was worrying me and I’d just had my second baby. I felt cheated after building up a rapport with this person. 
  • August 2015 – I wrote a letter of complaint to the local health visiting service (Worcestershire) to which they defended the actions of the health visitor, but also said that “lessons have been learnt.”

September 2015 – referred to ‘Early Help’ via our local children’s centre. We were then assigned a ‘Family Support Worker,’ and I was put on both ‘Family Links,’ and Triple P (PPP) Parenting courses. I have since learnt that this is the usual protocol if a parent identifies an additional need in their child. Since researching ASD and PDA for the past 12 months, I now know that the methods advised to use from the PPP course do not work with my child, who scores high on the online scales for PDA (from the PDA society website.) Family Support was given to us once a week, a lot of parenting strategies given and I took on board absolutely everything that was suggested. 

October 2015 – Starts a new Pre School, staff there noted observations of sensory processing difficulties and Sensory Processing Disorder (SPD) was first mentioned so I researched more via the Internet and publications. An Area SENDCo is mentioned but my daughter was not seen by this professional once in the whole 12 months of attendance, I was told this was due to SENDCOs being made redundant because the company Babcock International had taken over these roles at Worcestershire County Council. New Health Visitor noticed our daughter’s behaviour at home and said: “It’s not your parenting, I believe you,” actually puts a referral through to CAHMS that we thought was put in by previous HV.

December 2015 – Appointment at CAMHS Worcester, appointment with an Assistant Psychotherapist. Requested not to see our daughter so we attended with our youngest child. Outcomes basically from this appointment were that they were focusing on my anxiety and we were told to just “carry on with Family Support, as that seems to be working.” We left feeling very disappointed and I cried on the way home, after we had taken 2 buses to get there, and all this without even seeing my child. 

March 2016 – After the frustration of the CAMHS appointment, I started my own Blog that I named ‘Sensory Sensitive Mummy’ and opened up social media accounts alongside. I then connected with fellow SEND bloggers and joined many online support groups for the parents of children with additional needs. 

April 2016 – We saw Paediatrician for the first time who recognised that our daughter has ‘Sensory Processing Difficulties,’ with traits of ASD and ADHD, although she wouldn’t be tested for these until she has settled into school from September 2016, and that ADHD assessments are not usually completed until the age of 6. A referral was made to Occupational Therapy. Paediatrician also finds that my daughter has ‘Hypermobilty.’ “People with hypermobility are particularly supple and able to move their limbs into positions others find impossible. Joint hypermobility is what some people refer to as having “loose joints” or being “double-jointed.” (Source www.nhs.uk)

May 2016 – attended Play Therapy at the SMILE centre in Malvern, staff extremely supportive and encourage us to apply to the ‘Family Fund,’ a charity who provides grants to disabled or seriously ill children. I applied but wasn’t very hopeful. The Family Fund sent out an assessor to our home, and this person noted that she could see that our daughter was a huge ‘sensory seeker’ as she was attempting to launch herself off furniture. The assessor said “I’m going to recommend a grant for sensory equipment and 8 play therapy sessions and I really feel that your child will really benefit.” I was shocked when we were awarded the grant and cried a lot, in relief, as the equipment such as ‘bubble tubes,’ were out of our budget range. Encouraged by Health Visitor to apply to DLA to help with costs such as a ‘Weighed Blanket,’ which was to help calm our child during ‘Sensory Overloads.’ These blankets range at around £180. Refused 3 times for DLA, due to “need is not great enough.” Even though our daughter requires constant supervision. 

June 2016 – Bloods requested by Paediatrician to check for genetic anomalies in our daughter. 

July 2016 – told that the OT referral hadn’t actually gone through due to a “mix-up” our Health Visitor does the referral herself. 

August 2016 – Family Support ends due to us “getting on well.” I offer a ‘Sensory Diet’ throughout the whole summer holidays. Behaviour gets progressively worse throughout the holidays as she struggles without the education routine, behaviour at home includes: – Spitting in our faces – Shouting – Screaming – Hitting out at me, her father and younger sister – rough-housing younger sister – throwing objects – damaging property such as doors, walls (from slamming doors,) pulling stair gates from walls. Results from daughter’s bloods show a “copy number imbalance of uncertain significance.” A letter was sent out with details. No letter actually received until Oct 2016 when I requested from our GP. No actual genetic numbers given to explain the imbalance. Bloods requested from both myself and partner. 

September 2016 – Settles well into school, interventions offered such as ‘Relax Kids’ and ‘Sensory breaks.’ Some sensory processing difficulties noted by staff, in terms of processing time and sitting on the carpet. No sensory overloads seen at school. Behaviour at home continues to spiral due to the step up in what is expected after the jump up from Pre School to School, holding in sensory overloads all day and ‘exploding’ as soon as reaching home, overloads seen up to 10 times a day and some overloads lasting an hour until she is calm. Often takes both myself and her father to help calm her. I attempted to self-refer back to Early Help – Family Support to help at home – told that we “no longer qualify for this service due to government funding cuts, and that ‘targeting’ families will be concentrated on.” I was told to “ring the Autism West Midlands helpline and they can advise you further.” I attended a talk on ASD run by Autism West Midlands (advised to by staff at children’s centre,) which initally confused me, as we still have no formal ASD diagnosis, but what I gained from this was a lot of reassurance that my daughter was indeed displaying very similar traits to other children with ASD and I had my ‘Light Bulb’ moment regarding my own difficulties that I’ve had since childhood (where I have written a separate blog post on.) 

September 2016 – I stood up and talked about our journey at a scrutiny meeting at Worcestershire County Council directly addressing Cllr Marc Bayliss who is the ‘Cabinet Member with Responsibility for Children and Families,’ responsible for the decision on funding cuts, that resulted in us no longer receiving support at home. I later directly email him and his ‘officer’ Hannah Needham replied to me on Cllr Bayliss’ behalf, and told me that “you have received your package of support.” I hadn’t named my daughter in my email and I was angry that she had referred to my daughter by name, as well as delving into our records without my permission. This email completely ridiculed me. 

October 2016 – received appointment with OT who notices Sensory Seeking and difficulties with gross motor skills, offers to observe in school and gives advice at home such as a ‘Traffic Light’ behaviour system. OT assistant finds that school are ‘doing all they can.’ And gives them equipment such as a ‘wobble cushion’ to help support her listening during carpet times. Heard nothing about our blood tests until I chased, had tests. 

December 2016 – OT rings to discharge my daughter from the service although I share how difficult at home her behaviour still is and that we no longer qualify for family support at home. OT unaware of children’s centre cuts and advises to keep behaviour diaries to send to the Paediatrician. I constantly research ASD and PDA and talk to other parents who have children with the same. I try out methods that are used for children with PDA and my daughter responds to these methods such as avoiding the word “NO” and avoiding negative or demanding phrases (where possible,) more than the methods that I had previously been advised to do. I spoke to the school nurse to ask for advice on my daughter’s inability to feel full, that she is constantly asking and seeking food, and that she will rip off locks on the kitchen door to get to food, this professional advised that my daughter is under OT and that this should be the professional to offer advice.

January 2017 – Still fighting to be heard. Advocate for my daughter. Still waiting for blood test results… 

As you can see from this timeline of events, there has been a lot of passing the buck and loop holes in the system. How many more families are meeting the same fate? Especially if their child has an invisible additional need. I am very lucky to have linked up with fellow SEND bloggers and spoken to a lot of parents whose children show identical traits to our daughter, many of these children have a formal diagnosis of ASD/PDA. We know of another family who have a daughter so identical to our child, they could be twins! If our health visitor and the Family Fund assessor could see what I do –  why am I not being listened to or believed? What’s different about our case? Do they think it’s still my parenting after all this time? Am I exaggerating, making it up? I often think to myself after my daughter has had a serious sensory overload, “I simply couldn’t make this up, why would I want to?” We are not in this for the money – we don’t qualify for DLA! I am simply fighting for support for our child, to act as her voice, to ensure that she doesn’t have to go through the same struggles as I did – all the way through my school life and beyond. 

Bearnadette has started a petition to help spread awareness of ASD/PDA, please sign and share to prevent other parents and their children slipping  through the net and being misunderstood: 

www.change.org

Thanks for reading 🙂 

That ‘light-bulb’ moment…

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I first heard the word ‘Autism’ whilst I was studying for my 3-year teaching degree. Autism was referred to during my lectures on SEN and the SEN Code of Practice 2001 (as it was then known as back in 2001.)

I then completed a few courses run by the county council such as ‘Autism in the Early Years.’ I worked in a school in Norwich where there were a few pupils with ASD, just referred to as ‘Autism’ back in 2004. I must admit my initial thoughts about Autism were limited to people who find eye-contact difficult and those that seem to be ‘in their own world.’ How wrong I was, I had no idea that the ‘Spectrum’ was so wide and varied, util i started researching Sensory Processing Disorder (SPD) and Autistic Spectrum Disorders (ASD) in terms of gaining information about my own child and starting my blog in March 2016.

Some questions were raised myself, after watching a documentary on ‘Girls with Autism’ http://www.itv.com/presscentre/press-releases/girls-autism a documentary shown on ITV in July 2015, based at Limpsfield Grange in Surrey. Which is the only state run boarding school in Britain specialising in girls with Autism. During this documentary it was highlighted that in some teenage girls, diagnoses such as Anorexia, Depression and particularly Bi Polar, have been given and not Autism. This hit home for me, remembering the time that my mum took me to my GP and said “please help, my daughter won’t eat,” after I only ate minimal food such as cucumber and gagged on the majority of my food, at the age of 14. I have often been told that I am anxious and/or depressed, In 2009 a doctor in Norwich labelled me as ‘Bi Polar,’ but I’ve always had serious doubts that this is the case.

It wasn’t until I attended a talk led by ‘Autism West Midlands’ in September 2016, that I had a ‘light-bulb’ moment. As we discussed various traits and issues experienced by other parents I sat there thinking, that sounds just like me! When discussing that some children simply cannot tell when they are full and have no idea when they are full, I thought “that’s me.” This also applied when talking about masking at school and building up sensory overloads all day at school, and then finally releasing like a volcano erupting once reaching home. I was a huge conformist as a child and a teenager, I can remember only ever having 2 detentions in my whole school life! I am, and was scared of authority, I used to get upset if other children were shouted at in class.

After the Autism talk I decided to look into the pro’s and con’s of going to ask my GP about the possibility of an adult assessment for ASD, in particular Asperger’s Syndrome, but I’m currently unsure if this can still be referred to?

I realised that I had taught myself how to deal with a lot of my traits as I’d grown into adulthood and that I am functioning fairly ‘OK’ these days, so I wasn’t looking for any sort of support in terms of strategies, although I’m always open to suggestions! Some of the things I have taught myself over time are:

  • Understanding jokes and sense of humour – although I still don’t always get some jokes!
  • How to gain and keep eye contact – this didn’t happen until I was around 18 and got my first job in customer service.
  • How to understand non-verbal cues in conversations, e.g. winks, yawns (if someone is bored!) etc.
  • How to hold a conversation that isn’t entirely one-sided! Sometimes I literally have verbal diarrhea – If I’m talking about something that I enjoy, or that I’m passionate about I forget to allow the person I’m talking to to respond or have their own say, so I’m now more aware of how conversations should go!
  • To know that not everyone has to be ‘my friend.’ I spent a great number of years trying to please everyone, I have been known to change my point of view to one that I know that the other person would agree with, if only to diffuse a situation and to avoid a disagreement or argument as I really am uncomfortable with any sort of confrontation. As a result I have often been ‘walked all over’ and have been a easy target to manipulate. It is only in the past year that I have said to myself ‘enough is enough’ and have stood up several times for what I truly believe in. I think becoming a mother has played a huge part in this!
  • Relationships ! This has always been a sore subject! Well until now! I’ve always struggled to find people that actually ‘get me.’ I was often called weird and it was difficult for past partners to live with my ‘quirks!’ I think this explains why I have struggled to commit long term in the past and also struggled to trust. Once I found someone who understands me it was very different, very difficult to live with at times, but I am not as impulsive as I was in my 20’s!
  • Saying things I don’t mean and speaking without thinking first, I don’t have a filter for the majority of time! If a though pops into my head it literally comes straight out! This results in me often wallowing for hours after a conversation wondering about why I said what I did and if the other person in the conversation was offended by what I said! Saying the wrong thing and people looking at me when I talk are the reasons that I didn’t talk very much as a child at school, I was labelled throughout my school life as ‘painfully shy.’ In fact, I knew most of the answers to questions in class I was just desperate not to be noticed or attention drawn to me, I like to fade into the background and would have loved an ‘Invisibility Cloak!’

Knowing that I am functioning in terms of running a household and caring for 2 young children, I had to think about the possible advantages of an adult ASD assessment:

  • I would hopefully be given answers to questions that I’ve had about myself my whole life, to confirm or dismiss any previous diagnoses.
  • Not a great deal would change, I would still have my home, my 2 children and partner of 6 years. I have also been able to hold down a job since I was 16 and I’ve worked in Childcare and Education for 13 years with only having around 6 week’s off work sick. I would also hope that my friends would understand me and that I haven’t changed, friends are precious to me as I find it so difficult to make and keep them!
  • I would hope that it may support future job roles, as I do hope to eventually work with children with additional needs, especially those with ASD, and Sensory Processing Difficulties as I can put myself in their place, I kind of know how they may be feeling, and If they are getting upset about something, it can be something as simple as a label in their clothes that has been making them feel uncomfortable all day.

I also had my doubts:

  • Would people treat me any differently? Think of me as only trying to gain money from a diagnosis, when it’s the same for my daughter, we don’t qualify and it is not the reason behind it – the reason is helping to accept myself and move on.
  • Would it affect my career? I’m worried that some may think that a diagnosis would effect my ability to do my job, but as stated above I have been doing it for 13 years, my paperwork is meticulous and I could never do any other job as it’s all I’ve ever known!

As I have dispelled my own doubts, I went to my GP after scoring myself with an online Asperger’s test where I scored 48 out of 50. I sent this test prior to my GP appointment and from there I was referred straight on for an adult ASD assessment. This was in October 2016 and I’m fully aware that this is going to be a long process and I’m prepared for the wait. I have spent many appointments with my daughter where I have explained in great detail how she feels, and have been often questioned:

“How do you know how she feels?” 

My reply has always been:

“Because I feel the same.” 

This is especially prominent in terms of sensory sensitivities such as itchy jumpers and labels in clothes!

What I hope to say in future appointment is:

“Because I am an adult who has ASD.” 

I have taken a while to write this post, I felt ashamed at first, I wrote a poem and had it shared anonymously, very kindly by Kelly at ‘Its a Tink Thing.‘ Here is the poem I wrote;

http://itsatinkthing.com/special-needs/a-cry-for-help/

Only this Monday I read the following article, published by the Guardian:

www.theguardian.com/autism-hidden-pool-of-undiagnosed-mothers

The following quote hit home for me:

“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Gould.

Source: theguardian.com 26/12/16.

I’m literally had no idea about my traits until I started looking into Sensory Processing Disorder, and I was invited to the talk on Autism by our previous Family Support Worker, this article states that there are other people who have the same experiences. I am currently in limbo as to whether I continue the fight for Lou or give up as I often left to feel like I am ‘making it all up,’ ‘fabricating’ or ‘exaggerating.’ My parenting has been blamed many a time for the behaviours that our daughter displays at home, I’m often left to ask people around me if they believe me, my poor mother has been asked this so may times, but as I have dedicated 12 months to building my Blog, Facebook and Twitter to my daughter’s story how could I simply be making this up?

For now, I’m taking each day at a time and seeing where it takes us.

One thing is for sure, I’ve learnt that I am who I am and I cannot change who i am and that I should be accepting of myself and proud of what I have and what I have achieved in my 34 years on this planet! 

I would be completely lost without online support groups, there are support groups for people who are experiencing the same and it helps so much to talk to people that completely ‘get’ what I am saying. I have to also thank Autism West Midlands and The National Autistic Society for their wonderful websites, which have given me so much support and information.

 

If anyone is interested below is a link to my notes that I hope to take to my initial ASD assessment appointment. I welcome any feedback in terms of other adults who already have an ASD diagnosis to see what they think about my traits.

notes-for-assessment-for-blog

 

Thanks for reading, and hopefully understanding! 🙂

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