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 🙂 

Don’t say NO! Our experiences with PDA 


Last year I wrote 2 posts on PDA (Pathological Demand Aviodance,) 

https://sensorysensitivemummy2.wordpress.com/2016/06/26/pathological-demand-avoidance-pda

And: 

https://sensorysensitivemummy2.wordpress.com/2016/06/26/pda-part-2/

Both of which explain the main features or ‘traits’ of PDA, so for PDA Action day (15/05/17) I decided to share how PDA looks in our household. 

Avoiding negative phrases and ‘demands.’ 

The worst response I can give when my daughter, Lou (5) asks me a question is “No.” In our household saying “No” outright usually results in objects being thrown, shouting, screaming, hitting, kicking and could result in a total meltdown. 

From researching PDA over the past year, I realise how important it is to think carefully about how we word every phrase for our daughter, it’s taken so long to get used to and you have be quick-thinking and very often think ‘outside the box.’ Lou has a lot of obsessions around food, she repeatedly states to us that she’s hungry, she never feels full. If Lou asks for something to eat and she’s already had plenty to eat only minutes before, we simply cannot reply “No,” nor “not now,” as I discussed previously, this will result in a great deal of anger and frustration and things get thrown! We have to use a visual chart where we point to the meal and time of day, Lou removes the snack card and we point to the next meal, e.g lunch and say: “next time we have food is lunchtime.” We use minimal language and often have to repeat the same words to aid her understanding. Not saying “No” is a very difficult thing to do! Having to think of what to say before you say it every time takes a great deal of my ‘brain energy!’ 

Lou will avoid any demand put onto her, getting her dressed in the mornings often takes both myself and her Daddy, we cannot simply say “get dressed,” as the answer will always be “no,” or she will shout replies back such as: “No you silly Poo,” or “you’re a really silly woman,” she has even told me: “You’re an awful Mother,” (I have no idea where she’s heard this phrase!) It took me a while to get used to these ‘come-backs,’ but I do have to let these ‘outbursts’ go over the top of my head to avoid ‘fuelling her fire’ even more. We have to use choices for absolutely everything: 

“Trousers or T-Shirt” this often still results in “No, I’m not getting dressed today,” when we have to give the choice of: 

“You do it or Mummy/Daddy do it.”

It can often take over 30 mins for Lou to be fully dressed as she also likes to run around the house to see if we can catch her to get dressed! 

This is also the same when it comes to tidying up, we have to give a lot of praise when Lou does tidy up and in the last month I can only remember this happening once, we’ve modelling tidying, but the demand of doing it is just too much for Lou to cope with. We use visuals and ‘Sign-a-Long’ for ‘tidying,’ and other daily routines. These sometimes work with Lou, but also sometimes don’t! We also have to be careful with wording and giving praise as Lou doesn’t cope very well with actually receiving praise, will not know how to handle it and often do something like throw all of the toys around the room in response. 

Lou struggles with sudden or unexpected changes to her routine, even as an adult I am exactly the same! We recently had to leave our holiday 3 days early as Lou had got chicken pox, we had to get the train home 3 days early and we’d planned to take both girls to a theme park for the day, we had previously prepared Lou for this day out with talking through it and visuals of what would happen. When we had to tell her that she couldn’t go to the theme park as she had chicken pox it was like a volcano had erupted! Lou shouted all the way walking to the train station, “adventure park Mummy,” and repeated it and then would say things such as “this place is stupid,” “silly train, silly place.” She also refused to move and sat on the pavement in the middle of the town, in protest! This made me so disappointed for Lou, and the change in the plans had set me off and therefore Lou’s Daddy had to deal with us both all the way to the train station! It took both myself and Lou a good hour or so to finally calm down and adapt to the changes. 

I find it confusing as to how Lou cannot process demands yet she places a lot of demands onto myself as her mother and main care giver, and also her dad. She will say things like “get my snack now,” “I said get me it NOW.” I found this difficult to cope with at first but after reading up on PDA I realise that: 

“People with Pathological Demand Avoidance (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.” 

Source: http://www.pdasociety.org.uk/what-is-PDA/about-pda

I hadn’t pieced together that the anger and frustration I see in Lou is actually all down to anxiety and this manifests more when she doesn’t feel in control of situations. 

There are so many more things I could say about PDA, I’m still learning more every day. It’s exhausting and I feel it’s quite catastrophic, but what we have to do is take positive steps to ensure that our daughter is helped to cope in the best way possible. 

My hope is that PDA does become more widely recognised as I hear so many different experiences where PDA is recognised in certain counties in the UK and yet in others professionals refuse to recognise it. 

PDA certainly does exist, and we live it everyday! 
Brilliant sources of information on PDA: 

The PDA Society – http://www.pdasociety.org.uk/

The PDA Society has created the PDA Panda ambassador for PDA Action day on 15th May 2017. You can read more about it here: 

http://www.pdasociety.org.uk/blog/2017/05/pda-panda-ambassador

Steph’s Two Girls: Steph is a fellow SEND blogger 

http://www.stephstwogirls.co.uk/?m=1

PDA Hearts and Stars: 

https://www.facebook.com/PDAHeartsAndStars/

Riko’s PDA Page: 

https://www.facebook.com/RikosPDApage1/

Sally Cat’s PDA Page: 

https://www.facebook.com/SallyCatPDA/

PDA Soapbox: 

https://www.facebook.com/pdasoapbox/

Love PDA: 

https://lovepda.wordpress.com/

Life with ASD and the Rest:

http://www.lifewithasdandtherest.net/?m=1

Advocate4PDA: 

https://advocate4pda.wordpress.com/

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 🙂 

Our Neurodiverse Family 


It was only a few months ago that I even heard the following terms:  


And: 


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.” 

Source: https://en.m.wikipedia.org/wiki/Neurodiversity

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.” 

Source: https://en.m.wikipedia.org/wiki/Neurodiversity

I also: 

“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. 

community.fireflyfriends.com

“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.[13]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.[13][15] They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated.” 

Source: 

https://en.m.wikipedia.org/wiki/Neurodiversity


Our Family Dynamics

We want to celebrate our Neurodiverse family, even though there are many challenges, we are all about the positives 🙂 

Lou (5): 

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 (2) 

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

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

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 🙂 

Click image to go to the Family Fund Website

I just thought I’d also add a fantastic piece of writing I’ve found this week from Faithmummy :  

Autism poem

Which shows the diversity of Autism and describes the many differences of my 2 children.