Saying things we don’t mean ~ PDA series 

Pathological Demand Avoidance (PDA) series.



PDA is a part of the autistic spectrum that is currently not recognised as a stand-alone diagnosis in the county of Worcestershire where I live, there seems to have recently been some diagnoses given of ‘Autism with a demand avoidant profile.’ It wasn’t until I came across information on PDA from the PDA Society via my networking with other SEND bloggers that I found out about PDA and realised that we’ve been living with it every day with our eldest daughter.

As time as gone on and I’m researched more regarding PDA, I have come to realise that I too have certain traits, although as an adult they are not as recognisable as my daughter’s traits, as over time I’ve learnt how to cope and train myself to deal with everyday demands, even though I had no idea that these feelings, in fact, had a name. One of the main traits I recognised in myself was the strange feeling I get if someone tells me to do something, especially if it comes across in quite an aggressive manner or someone tells me I’ve done something wrong and I wasn’t sure of the right way to do something. I get this awkward ache feeling at the pit of my stomach, I will hold it in as I want to appear ‘normal,’ on the surface but inside I’m screaming, I’d very much like to exit the situation and run away, but I can’t. I often hold these frustrations in until I get home, usually by holding in tears and letting it out, or in fact feelings of anger. On the other hand, if there’s something that I really want to do, such as make a hot drink for my partner and I haven’t been asked, or told to so, I get a better feeling of ‘I like doing this.’ My eldest daughter, Lou, is exactly the same as this, we have to carefully word questions and instructions in insure it isn’t perceived as a ‘demand,’ such as using a statement like “arms in your coat,” in a positive tone of voice, rather than “put your coat on.” As she will usually respond to this demand by throwing the coat on the floor and a refusal to put it on.

For this first post in the PDA series I am looking at explaining why people on the autistic spectrum may say things we don’t mean to someone who has opposing views, or someone that has just ‘told us off,’ or given us a ‘direct demand.’ It is important to remember that individuals with PDA are highly anxious and the anxiety they are feeling may come out as anger, frustration or even aggression, due to the feeling of being out of control of a certain situation. For myself, I really don’t like confrontations, I don’t like raised voices and I will do all I can to avoid confrontational situations, even to the degree where I’ve agreed with things I don’t really agree with to avoid a varying and opposing point of view.

People with PDA “don’t see anything as being their responsibility. They aren’t very good at keeping secrets and they say things that are unkind without understanding the upset these words cause.” Source: http://aspergersasdconnect.blogspot.co.uk/2011/09/pathological-demand-avoidance.html

Only this week I also read the following article by ‘The Mighty’ https://themighty.com/2016/07/what-autism-meltdowns-feel-like-for-autistic-people/

Where individuals on the autistic spectrum themselves described what a ‘meltdown’ actually feels like. When I read the following statement, I could 100% relate:

“I feel all sorts of emotions all at once and I want to run away from them all. I lose sight of what is socially appropriate and start to say things I either don’t mean or something I’ve wanted to say deep down. Whenever that happens I end up hurting someone or confusing everyone.”

This keeps happening to me now, even as an adult and it is the main cause of my anxieties, particularly social anxiety, as I simply cannot remember what I’ve said to people in meltdown mode, as I haven’t even been aware until after the meltdown that it was in fact a meltdown that I’ve been experiencing! This is such a complex thing for me to understand about myself and therefore to try and get others around me to understand is one of my biggest challenges to date. The self-awareness that I now have with this has taught me to make people aware that it is best to actually ignore me if I’m starting to say horrible things, if I’m in a stressful situation or if being challenged about something, such as what I may have written on social media. Unfortunately, some people have pressed me for answers or ‘had a go’ at me after something I said when I was mid-meltdown and there is no going back, I will say stuff that may have been floating around in my head or thoughts that I have deep down but ordinarily wouldn’t say in public, but lose all sense of filter during a meltdown and it all just comes flowing out and I simply can’t stop it.

The guilt that comes after these occurrences is intense, this time last year, after occurrences where I’d said something I really didn’t mean to I would hide myself away and be too afraid to go out where I may see the people who I have ‘upset.’ The best way forward after an occurrence like this is to just forget it and carry on and not become absorbed in analysing what shouldn’t have been said as it will just take over and it becomes very difficult to get on with everyday tasks. These occurrences are just like when Lou, will come out with some hurtful words during a meltdown and as a parent, I have to just let it all go over the top of my head. I often get responses such as “you’re a really bad mummy,” “You are so stupid,” and “I think you’re a terrible mother,” which for a child of not quite 6, is quite complex. At first these sorts of statements hurt me emotionally but after researching, I now let it go over the top of my head and don’t respond as I know it will cause even more upset and cause an arguments, which is what I desperately tell other people to do even though I’m an adult, when I say things like: “please don’t keep pressuring me as I don’t want to talk about this right now,” and “Please stop as I don’t want to say anything hurtful.”

 

I do hope that this gives a bit of insight into the reasons behind this trait that can be seen by individuals with PDA, or indeed any person on the autistic spectrum experiencing a meltdown.

For more information on PDA please visit: 

https://www.pdasociety.org.uk/

I also watched an amazing webinar by Operation Diversity where Dr Jody Eaton (Clinical Psychologist) explains about PDA in children. She mentioned that often children cannot remember what they have said or done during a meltdown. This webinar can be found here: 

PDA Webinar

Thanks for reading 😊

Avonreach Academy Trust proposed change of age range ~ my response 


Last week I was given a copy of the following consultation: 

http://www.avonreach.org

This is my response to the proposals to add year groups into a few local schools and the implications it will have on my family and others who attend the same school as my children.

Avonreach Academy proposed consultation – Age Range.

Dear Sir/Madam,

I have recently been made aware of the proposals to change the structure of the Avonreach Academy schools. In particularly the 2 schools of Pershore High and Cherry Orchard First, in Pershore will have implications for my children. Both of my children, age 2 and 5, are based at the Abbey Park campus in Pershore, with one in the Pre-School and the other in the year 1 class in the first school. We moved to the Cherry Orchard area of Pershore in September 2017 to a more appropriate house for my children’s needs, my eldest child is being assessed for Autistic Spectrum Condition (ASC) and my youngest has sensory processing difficulties and Hypermobility. We were turned away from Cherry Orchard first school as there was not a place for my eldest child at the school, it has actually been a blessing that Abbey Park schools could accommodate both my children as my youngest child has started at the Pre-School on site and will remain on the same campus until she reaches the end of year 7 at Abbey Park Middle school. As a family we like the idea of the Abbey Park family of schools, both of our girls thrive on consistency and familiarity and I want them to remain on the Abbey Park campus of school as long as they can.

Children in the Cherry Orchard area of the town have traditionally attended Cherry Orchard First school and then go on to attend at Abbey Park Middle school. This 3-tier system worked for myself as I was one of 4 children that came from a small village first school (Upton Snodsbury First,) and by attending Pinvin Middle school for 3 years this helped me a great deal, I simply wouldn’t have coped moving from a primary school straight onto a high school.
As you may already be aware of the volume of new houses that are going onto the new housing developments just off Station Road and Wyre Road in Pershore, it should not be the later years (years 5 and 6,) that need to be concentrated on when these children are already catered for at Abbey Park Middle, it is clearly the younger years, like at schools such as Cherry Orchard First that need to be extended, as it is the catchment school for the new families moving into the new developments, surely a priority should be extended the earlier years from Reception to Year 4, and ensuring that new families moving in can get a place at their catchment school, rather than adding on an extra 2 classes in the later years?
There is a small section in the consultation’s ‘frequently asked questions’ regarding the extra volume of parents and children to the school. As we live in the Cherry Orchard area of Pershore, we cannot even walk the same side of the school at drop off and pick up times as cars cover the street and parents waiting for the school gates at Cherry Orchard First completely cover the path and it is impossible to get my child’s buggy down through the crowds. With adding any more children to the school this situation needs to be carefully considered as it is a real safety issue.
In summary, rather than changing what we already have, why is there not a new first school being built to accommodate all of the new families moving into the area? I am under the impression that this will also affect schools such as St Nicholas Middle in Pinvin, and St. Barnabas Middle in Drakes Broughton? Our 3-tier system works well so why bring around change that will cause so much disruption? Yes, we will be like Worcester area schools with the 2-tier system, but shouldn’t we be proud of our unique system that has worked for so many children previously?
Thank you for your time,

Miss Nicola Perrins BA (hons) EYTS. 

If anyone local to the Pershore area (Worcestershire) wishes to also share their views you can also email our local councillors: 

Harriett Baldwin: harriett.baldwin.mp@parliament.uk

Liz Tucker: ltucker@worcestershire
Thanks for reading 🙂 

Are you sure you are fit to be a mother?


Only last week I had my first experience with an internet ‘Troll,’ someone for the first time in my 18 months of blogging wrote a negative comment about my personal journey and I feel that I handled it a whole lot better than when I first started sharing our journey in March 2016.
I noticed that a relevant article to my journey to adult assessment for Autistic Spectrum Condition (ASC,) was shared via a support group I belong to called ‘Mums on the Spectrum,’ which is a group of just over 1,800 mothers who are on the autistic spectrum. This was the article shared:
www.healthy-holistic-living.com
This post was shared from a Facebook page about ‘Vegetable gardening,’ which didn’t matter to me, but when read the comments a lot of the posters were complaining about why a post about recognising autism later on in life, in women was shared on a vegetable gardening page. So, I wrote a summary about my journey with misdiagnoses and how each one could be seen as traits from someone on the autistic spectrum and I also wrote how it didn’t matter where this post is shared as it is very good for awareness and understanding. A poster was complaining about individuals who “just seek a label,” and I realised that because I belong to so many supportive networks such as my SEND bloggers group, that I forget that there are still so many people out there that just don’t understand about autism, or even want to try to understand, even in today’s society and wonderful nationwide awareness campaigns from the National Autistic Society (NAS.)
The worst comment I had written back to me was:

“You have been diagnosed with all these mental health issues and still decided to have a child? Are you sure you are fit to be a mother?”



My immediate response was to justify myself and referred to the ‘Heads Together,’ campaign that is being promoted via the Royal Family members, I wanted to get across the message that in 2017, it’s ok to talk about our mental health, not like in the 90s or early 2000’s when I just felt too ashamed to talk to anyone or admit that I had such issues, even to a GP or any other professional. Therefore, I didn’t receive the appropriate help and support. I gave this individual a reason for every one of my misdiagnoses, or in the case of anxiety and depression – a co-morbid condition that had resulted from spending years and years of ‘masking’ my difficulties in desperation to appear ‘normal’ in public. I explained that:
• In 1996, at the age of 14, I was diagnosed with Anxiety and Depression – the reason I believe that I was aware more that I was ‘different’ to my peers, I felt different and I thought differently, also reminded through constantly bullying every day at school.
• In 1999, at the age of 17, I was diagnosed with OCD (Obsessive, Compulsive Disorder,) and an eating disorder which my mum has described to me that this was in fact Anorexia, although I wasn’t aware of this at the time. As a teenager there was a pressure to be thin, but my eating issues were more down to texture, which I believe was a sensory processing issue and I’ve learnt over time that this is why I prefer dry and crunchy foods, rather than soft, sticky or soft textures of food. My 2 girls are also the same. I can remember gagging on a home-made stew because I didn’t like the texture. The OCD was down to a desire to keep things in order to have control over some aspect of my life as I felt so out of control at school, in that I felt I was being watched and picked on at every opportunity through people that didn’t understand me and would highlight my differences as if I should be ashamed of myself. At 17 I liked straight lines and absolutely every single item in my bedroom would have a specific place and if these items got moved I would know and move them straight back into place. I have also been specific since the age of 17 where my personal items are, and I will check every so often if I have my keys, purse and phone in my handbag as I have a fear of losing them. When completing my online course on ‘Understanding Autism,’ I learnt that OCD can be a co-morbid condition alongside Autism, also that I love to keep things in a routine, and if that routine changes It causes a lot of anxiety. The National Autistic Society (NAS) states that: “Obsessions, repetitive behaviour and routines can be a source of enjoyment for autistic people and a way of coping with everyday life.” Source: www.autism.org.uk
• In 2008, at the age of 26, I suffered a Psychotic Episode, one of the scariest experiences of my whole life. Mind – states that: “Psychosis (also called a psychotic episode) is when you perceive or interpret reality in a very different way from people around you. You might be said to ‘lose touch with reality.” The one thing that was very noticeable from this episode was my very high level of paranoia. This happened just after I got married, a huge event to plan, where everyone’s focus for that 1 day was on me, I was working at a high level at work, full time and living away from my parents – a 4 hour drive away. On reflection planning a wedding, on the wedding day and my level of work at that time all required a great deal of ‘masking,’ appearing on the surface as ‘Neurotypical,’ and my brain just one day said, “I’ve had enough,” cue sleepless nights and my body not agreeing with Fluoxetine and the GPs in that area not knowing my background, and not enough awareness of how females on the autistic spectrum present, another missed opportunity to be properly diagnosed. This Psychotic episode lead to the eventual diagnosis of Bi Polar disorder, which the Psychiatrist I saw back in Worcestershire when I returned home, said that it was in fact a ‘severe episode of depression,’ and not in fact Bi Polar, but to this day I still have this ‘label,’ on my medical file. When I ‘mask’ as a female on the autistic spectrum, this is very taxing on my brain and I will suddenly break down and can no longer cope or see things rationally.
• In 2015, at the age of 33, I was diagnosed with Postnatal Depression which a health visitor had failed to spot and this wasn’t picked up until 5 months after the birth of my second child when I took myself along to the GP as I knew something wasn’t right. And later, in 2016 at the age of 34, I still have a diagnosis of anxiety and depression, but more anxiety on my file. To date I honestly believe that this current diagnosis is a result of ‘masking’ my difficulties for so long and not being listened to or believed in terms of my own daughter’s autistic traits in the home environment, having 2 children with additional needs, fighting for support, attending all the appointments, etc all takes its toll on me.

With all of this swimming in my head, I hope that my upcoming adult assessment for Autistic Spectrum Condition (ASC,) will show that a diagnosis of ASC would be the answer to the struggles I’ve had from childhood, and especially from the teenage years and realisation of being ‘different.’
I therefore wanted to justify my ‘choice’ for having children and I wanted to tell the original poster that asked if I “should really be a mother?” I thought about the 1,800+ group of mothers on the autistic spectrum group where I am a member, I thought about how all of these mothers would also feel offended by this negative comment. We cannot help the way our brains are wired, and I started to think that just because Autism is often seen as an ‘Invisible’ disability, would the poster also think that people who use a wheelchair for mobility shouldn’t be parents? Would they also be in the belief that parents who are blind or deaf shouldn’t be parents? I’ve also heard of instances where friends who have children with more severe additional needs have also been told that they “shouldn’t be parents.” Who is to tell us if we are or aren’t fit to be parents? The midwife during my ‘booking in’ appointment? The first person I saw regarding the pregnancy, I was honest about my previous ‘diagnoses’ and I was monitored throughout the pregnancy but not once was I told that I “shouldn’t have this baby.” I didn’t require a specialist appointment with a psychiatrist all throughout the pregnancy. Mother’s on the autistic spectrum are very good mother’s we have the same right as ‘Neurotypicals’ people to become a parent. Not once have I had a ‘meltdown’ in front of my children, I hold it in until they are asleep. I eat well, I do order certain items but becoming a parent has helped with the OCD more as I simply don’t have the time to keep things in the same order as they once were! I don’t stim in front of my children, (stimming or self-regulatory behaviours,) I rub my hands together once they are in bed if I need to. But even if I did stim or meltdown, it wouldn’t make me a bad parent, I shouldn’t feel ashamed by being the person I am. I have had 13 years of working with early years children and why shouldn’t I have my own children? In terms of my own social anxieties, I have always been aware that I want my children to interact with others, even if I struggle socially I have still taken my daughters to toddler/stay and play groups and it’s helped me to mix with other parents.

When I found out I was going to have a child, I had no idea at that point that I could even be on the autistic spectrum and therefore my partner and I didn’t have the discussion on any implications this may have, however, I have always maintained that my children have only improved the way I am and helped me with self-realisation and accepting myself. The main aspect that I’ve learnt is how to care for others before that of myself, I had practice in this area when working in childcare, but I was very much thinking about myself before I had the children. I have learnt that their needs come before mine, I still have to look after myself in order to care for them in the best way I can, but I will now think about their needs before my own, which is a huge step for me. 

Thanks for reading 🙂