***This started as a Facebook post here but a few people messaged and asked for it as a blog so here it is***
Recently I ended up in a rather heated discussion in an online parenting support group about autism. In particular the difference between high and low functioning. Now first of all, I’m not a fan of the word ‘functioning’, I detest it but as this quote fit what I was trying to explain at the time (plus some of Eliza’s own paperwork describes her as ‘low functioning’) I’ll use it just to explain my point. The photo below is of Eliza and Chris from Autistic Not Weird. Beautiful photo isn’t it? Eliza’s diagnosis on paper is written as “Autism Spectrum Disorder and moderate-severe learning difficulties”. On more than one report she’s also described as ‘low functioning’. Chris has a diagnosis of Asperger’s (And yes, I have his permission to post this photo etc).
The heated discussion I ended up in was a post about varying levels of autism, where people ‘sit’ on the spectrum as such but a small bunch of individuals were harping on about if you are high functioning you should lose the diagnosis label as you don’t deserve it. One lady in particular, I argued with at great length after she announced on the post that any child or adult that was considered severe autism or low functioning should be institutionalised so the Country could save the “wasted money given to the retards who don’t know what to do with it anyway” (Her words!). I was so angry with the whole conversation. The use of the R word alone was down right degrading and disgusting but to suggest those that are lower functioning should be locked away? And those that are high functioning should no longer be considered autistic?
Every single individual is different. Every single one! But high functioning does not mean that person doesn’t struggle. It does not mean they need no help or support and often they carry on unsupported because they are expected to which is damaging. Have you any idea how hard it is to be pressured in to being ‘normal’ because you are high functioning and that means society assumes you have no troubles or issues? And should you dare to have any issues, it’s assumed that you either need no help or that you are faking it or ‘not that bad’….. Let’s flip to the other side. Low functioning. This does not mean lack of intelligence, lack of understanding or that these children and adults are less than others. Eliza reads older than her years, is learning piano and brass horn, makes hilarious jokes and is very academically able with the correct support in place. But according to that person in the group, we should lock her away because she was discussed in a report as ‘low functioning’?
I’ll stop here because reliving that argument is making me angry and ranty! As much as I detest the word ‘functioning’, this quote sums up what I was trying to get across in that group. But I’ll just add that by no means is Eliza ‘low functioning’. It was a term used by certain individuals who chose to write her off at a young age rather than wait and see exactly what she was capable of.
When Eliza was diagnosed with autism, it was a relief. A relief because I knew she was autistic anyway but that single piece of paper with her diagnosis on was a key, a key to open the way to the specialist education, therapies and interventions that she needed. She was only 3 years old but early intervention is so important although not always available and the sadness and reality these days is that support services are being cut daily and budgets slashed so many children are now being forced to wait years for an appointment let alone a diagnosis. I know she was diagnosed at the ‘right’ time both personally and when all the services she needed were at our disposal. We were some of the lucky ones before the SEND crisis started spiralling out of control. The reality these days is that children and adults are being failed. They are left to wait, made to fit in, expected to adapt without support and this is damaging.
When Eliza was diagnosed, she had already been using Makaton sign language and began using PECS (Picture Exchange Communication System) to aid her communication. Her favourite word was ‘no’ which she could speak and sign perfectly! But when out in public, strangers would often stop and chat in the supermarket queue and many quickly judged Eliza for not replying to them, assuming she was rude. Often when I explained that she had very limited speech and was autistic and needed time to process things, we’d get replies including “She’s just trying it on, she’s fooling you”, “Oh but she’s a girl, she can’t be autistic” and “I’d not put up with that, I’d have her talking by the end of the day….”. Often Eliza would reach for the PECS cards I carried in my pocket or on her bag and point to pictures of what she wanted or what she’d seen. She was communicating yet the sight of these picture cards used to make people turn away and whisper, some would just stare at her and loudly ask “Can’t she speak then?” which would then send a lot of eyes towards our direction and often lots of sympathetic head shakes. The reality is that a lot of people do not understand autism, communication aids and or anything that they don’t see as the ‘norm’ and when they see a child or adult that is different, attitudes are usually ignorance or pity.
When Eliza was diagnosed, we lost contact with a lot of friends and even some family over the following couple of years. The child that had been attending parties and play dates was suddenly left out, despite the fact she’d never been anyone or anything different to the beautiful and funny girl she always had been. But diagnosis somehow made a difference. Suddenly Eliza wasn’t Eliza anymore to them. She was ‘the different one’ or ‘the autistic one’. Whether through ignorance or lack of understanding we were excluded. Eliza was excluded. Some family didn’t understand (some didn’t want to try to either) and we were given the “She’ll grow out of it, you’ll see” and “You read about this in the papers, parents getting their children labelled so they can claim extra money”. YES THAT ACTUALLY WAS SAID TO US! Family seems to assume that as they are family, they can say whatever they like without repercussions. Just because we are related doesn’t give you any right to be rude, ignorant and judgemental. The reality is that everyone has their own expectations of what is ‘normal’ yet many don’t wish to understand or at least try to realise that, actually, Eliza is perfectly normal thank you very much. She’s just different in the way her mind works. A diagnosis opened some doors for her regarding therapy and school but it also closed some with friendships and relationships.
When Eliza was diagnosed, it didn’t stop her doing any of the following –
Making friends and maintaining those friendships.
Learning to swim.
Reading at a level 2 years above her own age.
Taking control of her own anxiety and facing her fears of being in theatres, cinemas and restaurants.
Learning to play a brass horn and also learning piano.
Telling awful made up jokes about farts and burps.
Becoming an Ambassador for an Autism Awareness & Acceptance clothing line Just Ausome
Being asked by Chewigem to review and share feedback about their products.
Why do people leave us? Eliza asked me that question recently after watching a film that involved a friendship breaking up and people going their own ways as such. We chatted about how life can be different for everyone, how we can change, people move away, people die…. Eliza was comforted by the in-depth discussion we had that covered a lot of reasons. She likes logic and she also likes truth. She listens and processes the information in her own way and she moves on, happy with her knowledge that she gained. This doesn’t mean she isn’t sad or that she isn’t affected by what we talked about. Eliza shows a lot of empathy and understanding but she is able to move on with life knowing she’s saved the information for a day she might need to use it. As I sat thinking about the conversation she’d prompted, it reminded me certain memories, of how we lost certain people from our own lives.
Death. One of the main reasons people leave us. I’ll never forget the last time we took Eliza to see her Great Grandmother in hospital. I knew it would be the last time but little toddler Eliza was unaware and went about her business of waving at nurses and smiling at people. As we were leaving, Great Grandma hugged Eliza and whispered in her ear “promise me you’ll never grow old” and gave her a kiss. An emotional moment that has stayed in my memories and makes me tearful just writing about it. Because she was an incredible woman. Because I knew that was the last time we’d likely see her. Because it’s a promise none of us can make. Death will come for us all.
Distance. Some of my closest family members are not close distance wise. Oh how we miss them dearly. Family and friends move away for various reasons and you keep in touch as much as possible but it still feels like they left you or you left them. These days the internet helps so much with social networking sites, Skype and various online messenger chat boxes to use. It makes it easier to stay in touch but there is still that sense of loss that lingers.
Destruction of friendships. As a young girl it was a common thing shouted in the playground “I’m not your friend anymore” as children fell out with each other. It wasn’t long until they were best friends again of course. As an adult, friendships break for other reasons. One of the biggest things I wasn’t prepared for was how an autism diagnosis would cost us over seventy five percent of our friends. When Eliza was diagnosed at age 3 it was a time we all needed understanding, love and support. Instead we watched people leave our lives because they didn’t understand or didn’t want to. Our lives didn’t sync with theirs, we had very different priorities. Friends I’d known for over ten years simply walked away. Some family too. Still, it filtered out the ones that would stay no matter what. The ones that said “I’m here” and meant it. We’ve also gained some amazing friends through online support groups and Facebook pages. Our internet family (and a few we have met face to face and are now much loved and very important people in our lives) We are so thankful to have them. I know who will always be there for us. I know who won’t leave.
There’s more I could write but my time is up. This was a prompt for ‘Finish the sentence Friday’ and this weeks subject was to do a 5-minute stream-of-consciousness using the prompt “Leave”. Hosted by Finding Ninee and Sporadically Yours
There are four of us living in this house. I used to say three of us as we are the ‘physical’ ones but we seem to have an extra one here a lot of the time. Yes, there is myself, Eliza (9), Noah (4) and anxiety (the uninvited and invisible guest that randomly becomes visible, usually at times when you wish it would just bugger off). This year has been a bit rocky, my own anxiety took control over me earlier in the year for a while but I’m starting to feel like me again and that I’m now back in control. Eliza’s anxiety is usually around social situations, especially in unfamiliar environments but there are random times it just consumes her as if it’s just reminding her it exists. For nine years of age, she handles her emotions pretty well and refuses to crumble when it makes an appearance. It can be tricky in our house, Eliza and I can either bounce off each others anxiety and get by or we can feed off each others anxiety and have a day where we need a little space from each other or more structured days where we both have the same agenda as much as possible.
Eliza wasn’t always anxious, she was quite an independent, feisty and confident child. Until regression dropped by (another uninvited but slightly more visible guest) and took away her speech, some of her fine motor skills and reversed a lot of her skills in general. She had to relearn how to hold a spoon, how to hold a pen and draw but most of all she had to learn to be Eliza again but without her words and that made her extremely angry and frustrated. We relied on Makaton sign language for communication and through this she started to make sounds with certain words that she signed and she’d often sit in the corner of the room with her cuddly toys, whispering the noises or letters she could say as if she was practising what she had gained back speech wise. It took a few years for her speech to return enough for the pediatrician and speech therapist to stop documenting her as a ‘non-verbal’ child. I can remember on a few occasions that if she pronounced a word slightly wrong it really made her anxious. She’d be very cross with herself and get upset. A year ago she watched a video of herself when she was younger. She was signing animal names and making the noises that they make. Back then she had around 10 spoken words. She looked happy to watch it but anxious and then she told me that she is scared her words will go away again. Sadly nobody has a crystal ball to see whether regression will strike again or something else but she’s doing amazingly well for a girl who had to wait a long time for those words and skills to return.
At the time her speech started to return, her anxiety suddenly rocketed. Everyone assumed that as she began talking again, her anxiety would decrease but it did the opposite. We became quite housebound for over the next year or so outside of school hours. Supermarkets were an absolute no go area, she just couldn’t cope with people, noises, busy places, sounds, smells…. complete sensory overload! Suddenly she couldn’t even face the cinema, soft play, parks, restaurants….. anxiety was taking control. I often used to think that it stemmed from the speech returning, the fear that she’d lose the speech again so she was shutting herself away from the world and guarding what she had taken back from regression. Now she is old enough to talk about it (when she wants to) she was able to give me her own thoughts…. “I didn’t like busy noise…….. too many people……. my words get messy…. they might laugh at me because my words don’t always work…”
That fear and anxiety that people would notice how she said things, how she struggled to pronounce some words. How she needed processing time to answer questions and they might think she’s ignoring them. How she sometimes doesn’t know how to answer so you get a scripted reply from a TV show or a plain yes or no. How they look at her and see a child that is of certain age but her language ability is that of a younger child’s. That pressure to be what other people expected was already taking up space in her mind. Eliza is an extremely intelligent child with a wonderful and adventurous personality but in the past she has often been told she can’t do things by teachers, pediatricians etc. It’s not that she can’t actually do things, it’s that they assume she can’t and therefore don’t even bother giving her a chance. But they tell her she can’t do stuff and that impacts her anxiety and her confidence partly as she’s unsure whether they are correct but also because she feels wronged by their decision. She may well not be able to do whatever it is she wants to try but at least let her try, that’s all she wants. Anxiety and her autism diagnosis were used on more than one occasion by certain people as an excuse to why they made decisions for her instead of with her. Eliza was also bullied for a while, both emotional and physical attacks. Her bully was a huge factor to her increase in anxiety to the point she’d have a panic attack in the car and couldn’t breathe if we even drove near where he was. (And sadly her being bullied was not taken very seriously by school at that time and was pretty much ignored).
Despite anxiety taking control of Eliza a lot of the time, she was still able to do ballet lessons, street dance, trampoline club, Rainbows (part of guides/brownies but for younger girls), after school cooking class and sports group and, possibly the best thing she ever did, equine therapy. So many people wrote her off, used her anxiety and her autism diagnosis as an excuse or simply went ahead and made decisions for her so we found a bunch of people/activities that welcomed her (and her anxiety) and allowed her to be herself and through them she gained confidence, pushed her own social boundaries and comfort zones, learnt social skills and improved her speech. Eliza was changing and finding her place in the world and she was starting to take control of her anxiety.
We moved house a couple of years ago to a different County which meant new area, new people and places, new school…. Lots of preparation went in to the move and she’s really changed since living here. We are lucky to live in an area that is close to a forest so we see lots of wildlife and have plenty of open spaces but we are less than fifteen minutes away from shops and town by car. Her School is amazing and she is thriving there. Reading at age 10-11 years, working hard in all lessons, learning to play a brass horn and the piano, taking part in sporting events and art shows. They just ‘get’ her completely. They support her greatly but they also allow her the independence she needs and most of all, they allow her to be Eliza. She still has anxiety at school although nowhere near as often as she did but she can get past it quicker with their support and understanding, she’s happy and comfortable enough to show them she is anxious but also able to take back control.
The last twelve to eighteen months has held a lot of changes for Eliza. Anxiety remains but rarely gets to show itself as she’s so used to it now, she’s able to distract herself or go have quiet time somewhere. Even on the rare occasion that anxiety starts to control her and she gets quite loud, tearful and stompy, she battles through it and attends whatever it was she was going to anyway. She won’t let anxiety beat her. She’s enjoying trips to the cinema again as well as the theatre for shows and plays. She’s loving being outdoors and has a huge list of places we can go, the boating lake is one of her favourites (which is crazily one of my least favourite places because, well, I just hate boats and lakes/rivers/seas/oceans….. but we go because she likes it there and she’s yet to ask to go on a boat lol). When anxiety does start to niggle at her, you’ll find her at the top of a hill, top of a climbing frame or the highest floor of a building where possible. This is how she copes. She likes the space and the height so she can look at her surroundings and calm down whilst deciding on her next move. Even shopping is back in play although she absolutely detests a couple of places that have very narrow and highly stocked aisles, she has a few she enjoys visiting.
As for me, my anxiety is fairly under control. I still have days where it seems to have a date with depression and they come along in tag team style and kick my arse for a while but I keep going. Therapy has helped and I remain on medication for the time being. I talk to a select couple of close friends about it which helps. I won’t go in to the long story of personal details of what caused my anxiety but I’ll share how it felt. Earlier in the year anxiety took complete control. I was having panic attacks, couldn’t walk in my own town without feeling that my legs were on fire and my vision blurring. I felt sick leaving the house and even going to a friend’s house made my legs shake. Even walking my son in to nursery, I felt like I’d pass out. A heavy-set feeling sat constantly on and in my chest and my heart was racing. I denied it for a while but it persists until it thinks it’s winning. Anxiety, oh how I hate you!
Self care is important, it really is and it’s something I have ignored for far too many years. I’m a masker. I hide behind a smile that is believable but fake. But I got away with it for so long it became the ‘norm’ and I forgot to actually look after myself. Instead, I filed everything in my brain to be sorted another day. But I never sorted it, I just added to it…. and added to it…. and added to it until my brain was full of things that I either didn’t want to think about or didn’t give/have time to think about. I couldn’t hold it in anymore and it was making daily life incredibly difficult. After reading some inspiring words that a friend had written about their past with anxiety, I made myself an appointment with the GP and got the help I needed and had avoided getting for so long. I didn’t want to notice my anxiety, I didn’t want to let it in. But there it was, that uninvited guest booking itself a room in my head. Anxiety wants to win. But I’m not going to let it.
Nowadays it’s a tug of war relationship, some days anxiety slightly leads until I pull it back over the line again. The way I get through it – I keep that hot tingly burning feeling in my feet as much as possible. When my legs start to burn I know anxiety has picked up the tug of war rope and fancies a test of strength. This is when I distract myself and find something to do (walking or rock painting are winners here). If the burning feeling gets above my waist level, it’s time to go home because anxiety is pretty much setting fire to the rope at this point and I’m losing my grip. Sometimes I just need to be home and have that safe ‘made it’ feeling and have a cup of tea. Sometimes I need short nap to regain my energy for the next test and have a cup of tea (Hey, I’m British. It’s what we do. Tea is the answer to everything!).
I’ve mentioned in previous posts that Eliza was pretty much ‘written off’ by a pediatrician when she was 2-3 years old. They told us to “not expect much from her” and “She will never read, write, speak, have friends……” and basically decided that she would amount to nothing and shoved her aside. What happened next? We got a new paediatrician that actually saw her for the amazing, intelligent and beautiful child she was (and still is). This is just a little recap blog or a mini timeline if you like. To show that she has proven them wrong. I’ll share 3 photo’s with you and tell you what they are all about.
I love this photo of Eliza. She was two and a half years old, loving the sunshine in the garden and loving life. By this point she’d had a regression period and her speech had gone, her mobility seemed to reverse and she struggled with walking and her fine motor skills deteriorated fast. Eliza had weekly speech therapy and attended many appointments with speech therapists, pediatricians, doctors etc to try and discover what had caused her to lose her speech (eventually at age 3 she was diagnosed as ‘Autistic with moderate-severe learning difficulties’). It was at this age that the pediatrician told us nothing but negative stuff. She’ll never………. She won’t…….. She’s not going to…… and looked at me with sympathy as he shook his head and wrote his report. (As above we never saw him again, we got a new peadiatrician). At this lovely tiny age Eliza was starting to learn PECS (Picture Exchange Communication System) and Makaton signing so she could communicate her needs. One of her favourite activities was throwing the PECS folder at the speech therapist (who learnt to duck really fast). She learnt signs fast and at school she remembered things well. She loved books and would look at them for hours with a huge smile on her face. Eliza was a fun loving, feisty little diva and she loved Mickey Mouse, iPad’s and chocolate biscuits.
We jump to this next pic of Eliza, aged 5 and holding a trophy she received at school for speech and communication!! That photo was taken exactly 4 years ago today. Her Makaton skills were fair, her PECS skills pretty good (and yes the PECS folder got thrown many a time, even out of the car window once!). But she also had speech. SHE COULD TALK AGAIN. That pediatrician was so wrong to say she’d never speak although he probably filled both Eliza and myself with extra determination to prove him wrong. And she did, she refused to be brushed aside and ignore all these negative assumptions. Eliza’s speech started to return not long after she turned 4 and it just kept coming. Her love of books was growing and she’d come home from School with new reading books each week. It was the most pleasant and wonderful surprise finding out how well she could read. Once her speech returned and kept improving it soon became very clear that she had a great memory and was very academic. She knew shape names that even I didn’t know, she knew about the moon and the planets and she’d recite stories back to me that she’d read at school. So there she is at age 5 and raising her communication trophy as high as her little arms could go with a look of pride and determination. Eliza was still a fun loving, feisty little diva and she still loved Mickey Mouse, iPad’s and chocolate biscuits.
This last photo was taken a few weeks ago. A nine year old Eliza who speaks really well despite her speech and processing delay, has a brilliant sense of humour with a slight sarcastic edge to it (no idea where she gets that from……….). Eliza reads at age 10-11 years and loves books, her latest favourites being ‘Captain Underpants’ and also ‘Diary of a Wimpy Kid’. School informed me that Eliza can even read music! She’s learnt to play a brass instrument as well as piano, she’s taken part in a table cricket competition and is quite an academically able child (despite what they said 6 years ago, they were so wrong!). She never stops trying to write, her fine motor skills need lots of work but she always tries hard. She has friends and loves to play. She still really likes shapes and patterns and has a real interest in Science and Religion (she loves reading her children’s Bible). It’s apparent that Eliza still has an interest in space as she recently woke me up at 3am in the morning to ask me if it was possible to cry on the moon! (Thank You Google for your help that morning). Eliza appears in a book that was put together by Chris Bonnello who runs Autistic Not Weird where she is one of 150 children that tell the world what she loves most about life. This year she has also become a young ambassador (with a little blogging help from me) for a clothing company that promotes Autism Awareness and Acceptance Just Ausome (She’s now on their website). And yes Eliza still loves Mickey Mouse, iPad’s and chocolate biscuits and is also still a fun loving and feisty not so little diva (she just keeps getting taller!).
Some things, like the loving chocolate biscuits, never change. But that doesn’t mean that nothing else will ever change too. Children grow and develop at different paces, there is no crystal ball to predict their futures and they certainly shouldn’t be written off at such a young age. I’m fairly certain Eliza will keep proving them wrong. I’m even more certain that she’ll have as much fun in life as she can and she’ll be the person she wants to be, not the person they assumed and decided she’d be back when she was younger.