So the best way for me to get my frustrations and anger out as usual is to write it all in a blog post! I’m sure I’ve been very annoying lately on my personal Facebook profile as I’m continually ranting about our current housing situation! This is because I feel so wronged and I’m trying to ensure that I do the very best for my children.
Some of what I describe in this post also relates to my current assignment for my course: ‘Understanding Autism,’ as I’m learning all about the legislation that protects people who are on the Autistic Spectrum.
I want to share this experience in the hope that other people do not have to go through the same.
One of the most surprising things about me is that I just can’t settle in terms of finding appropriate housing, considering that I’m going through an assessment for Autistic Spectrum Condition and I don’t usually cope very well with too many changes, I have moved house now 17 times since the age of 18! (This does include 3 different places whilst I was at University.) I am absolutely rubbish at making decisions, I never quite know what to do for the best, and it’s even harder now I have my 2 children to think about as their safety and happiness are paramount. My own mum describes my situation as the ‘fight’ or ‘flight’ method when things start getting tricky for me to cope with.
In the most recent of house moves, I’ve moved into the nearest city to be closer to where I worked but then the house got sold so we have to find somewhere alternative, we then moved into a new build flat in a local town but this was a first floor flat with no garden so Lou really struggled to burn energy and I was struggling so much with getting 2 children and a pushchair down a flight of stairs. We then found what we thought was the perfect house in a village location, complete with village school, park and green space 5 mins walk and my parents 5 mins away via car and walking distance to the nearest town, (well it takes me 40 mins, and I’m used to this as I walk everywhere!)
We had no problems really at all for the first year of living here, until around 6 months ago the neighbouring house (that’s attached to our house) became overcrowded. A house full of adults and confrontational ones at that! People lost jobs, being in a confined space and presumably bored, they argue and swear at each other constantly. They swear, every other word, loudly in the garden, Lou is currently being assessed for Autism, if she hears new or different words or phrases, she will copy and repeat over and over. I guess I am old fashioned in my views, but I simply cannot have her going into school and repeating phrases that I didn’t hear until I started high school! They also fight, and shout in the street, a month ago a fight broke out and someone banged my door very loudly, frightened that someone would get hurt I did call the police but they seemed to be talked down as seems the case a lot of the time, sadly. As I have described before in many previous posts, my eldest daughter Lou, displays a great deal of PDA traits (Pathological Demand Avoidance) and also ADHD, her high anxiety causes her to become very frustrated and often volatile. By hearing confrontations only meters away and through our walls, this is saying to her ‘it’s ok’ to be like this, whilst myself and Lou’s daddy are doing everything in our power to keep her calm and practice relaxation techniques.
There is 0 respect and 0 consideration, these people are disrespectful to all of the families in our row of houses, they stand in their garden after 10pm at night and have very loud conversations right under the window where my 2 girls sleep, often waking them up. When you have 2 children that find it difficult to fall and stay asleep this is beyond frustrating! But my voice is a lone one, no one else seems to back me up, bar one other resident, possibly in fear of repercussions. Since we started experiencing issues with these people we’ve had 2 visitors to our house – my parents – this tells me that we are being isolated even further than we already feel, and this causes me so much stress at the moment, especially as I feel that my children can’t invite any friends to our house. Oh and I forgot to also mention the Cannabis fumes that float into our home on a daily basis so much that we cannot have our patio doors or the girls’ bedroom window open as the rooms would fill with the fumes.
Oh and one of the most difficult things for me to get my head around is that the lead tenant of the household works in a local school in an Autism base! Surely this person should realise the effects of Anti social behaviour on people on the Autistic Spectrum? You would think? I certainly would want my child going to this school! At the very least I would have thought that this person should be aware that both of my children are very wary of loud noises.
So the housing agency we rent from asked me to keep an ‘Anti-Social Behaviour’ diary, which I have done since March 2017, like I haven’t already got enough on my plate! And just in case I may be making it all up! Then cue a visit from our local housing warden, which I have to admit was the most awkward interaction that I’ve had for a very long time!
The ‘warden’ (as I’ll refer to this person as for the purposes of this post,) proceeded to tell me that my complaint was “far too long” that I’d written about what we’ve been encountering as a family. The Warden sarcastically (I think) said that:
“By the time I’d printed off your complaint everyone else in the office had gone home.” On another day I may have found this funny, but not today when we were talking about a serious situation. So for the rest of this part of my post I will bullet point how helpful the ‘warden’ was.
(I did try and explain that I’m a blogger and writing is what I ‘do’ and that people on the ASD spectrum will often include all the details they know in fear of missing something out, that could be a vital piece of information.)
60% of the conversation we had over the span of an hour was filled with jokes, everyone needs a laugh now and again, but again, for a serious matter I found it difficult to understand the warden’s jokes, and by the time my mum had explained them to me, they were far from funny! My mum (sitting in on the conversation, and glad I preempted this,) attempted to explain that “my daughter doesn’t always understand jokes.) But no – unfortunately no understanding there.
“I’ve had much worse” and “other people have it much worse than this.” The Warden, in an attempt to make me feel better about the situation unknowingly made it worse! By proceeding to tell me that “only last week someone tried to kill me.” And that “in other areas they have it much worse than this.” Leaving me with the feeling that I don’t really wish to stick around to allow it to get this bad! For me it is difficult to see the outer world when I’m under great stress in my little world – within my family and surroundings, it may be the case that situations are much worse in inner city areas, but we are based in a small village and I didn’t feel that my situation and feelings were taken seriously, I didn’t need to have the worry placed into my head about how worse it can get.
The warden referred to ‘my anxiety’ and ‘seeing things differently,’ which, yes I do, but I felt belittled in the situation that I feel very unhappy about, I don’t think any family with young children should have to put up with such anti-social behaviours, regardless of whether they have anxiety or not.
The warden said directly to me: “What have they done?” I referred to the 2 sides of A4, (the ASB diary,) that I’d been asked to keep, so I replied: “Here, it’s all written down.” To which the warden replied: “No, what have they done to you?” My mum had to explain that the warden meant physically, what have they done, but physically I haven’t been attacked, why should it even have to reach this point? I cannot even stand to have other people, (other than close family members,) touch me, let alone stay around long enough to let anyone physically attack me, the warden said that the only way an ASB complaint would be taken seriously was if I was physically attacked! How could the warden even put this in my head that this could happen? Making me even more fearful. So banging loudly on my door and running away and having confrontations in the street shouldn’t be taken seriously? What about intimidation? What about the mental affects? It doesn’t always need to be physical.
Now I refer to the legislation that I’m currently learning about in my ‘Understanding Autism’ course, I am very grateful I had my mum present during this meeting to act as an advocate, to aid my understanding and decipher the ‘hidden meanings’ and sarcasm that this conversation was sadly full of. After this interaction I have since learnt that:
The Autism Act 2009: “informs local authorities, what actions should be taken to meet the needs of individuals with autism living in their area.” It states that local authorities:
“should provide autism awareness training for all staff.”
(Source: NCFE Certificate in Understanding Autism Workbook 1.)
If the warden had this awareness training then they would have known:
Not to fill 60% of time out of the hour with jokes.
Not to criticize the length of complaint given.
Not to state what is happening in the cases of people outside the immediate environment.
Not to use anxiety as an excuse for experiencing problems with the housing situation.
To listen and be respectful and be careful not to put extra stress onto the person via ‘hidden meanings’ in the conversation, to use clear and concise questioning.
Not to use sarcasm in the conversation, as it can make the person feel belittled and will shut down.
That people with ASD are often affected by loud noises, such as people shouting and confrontations.
People with mental health difficulties, and disabilities, such as ASD/ASC experience this sort of lack of awareness and understanding everyday. I want to do my best to combat this so that other people don’t have to experience the same as what I have.
And I still don’t know what is happening with the housing situation, we have a view to move, even though we are not the ones causing all of the issues, but I will do everything in my power to keep my children safe, there is also the issue that Lou is finding sharing a bedroom with her younger sister difficult and should really have her own specified space to allow her to calm in her own environment and Moo should have her own room as her ‘safe zone,’ where she can retreat to if Lou is having a ‘sensory overload.’ The uncertainty is unnerving, but watch this space.
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.”
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. 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.”
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.
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!
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!
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.
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.
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 😊
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 🙂