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 😊

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/

We’re not alone in our struggle…

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

Here is the original article I read: 

www.redditchadvertiser.co.uk

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

http://breakfasttree.com/

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

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

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

Source: www.breakfasttree.com

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

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

http://breakfasttree.com/asdpda-explained

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

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

Source: www.bromsgroveadvertiser.co.uk Bromsgrove Artrix

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

Here’s the time line of events: 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

www.change.org

Thanks for reading 🙂 

Charities I like to support and useful Websites and support groups

There are 3 charities in particular that I like to donate to: 

www.facialpalsy.org.uk

This is a topic that is close to my heart, Facial Palsy UK completes research projects which aim to create a better future for everyone affected by facial paralysis. As I get older I may enquire about surgery, as my skin loses its elasticity. Please see here for more on my personal story: http://wp.me/p7BVlE-1m

http://www.autism.org.uk/

Find out about diagnosing autism (including Asperger syndrome), and the impact on people and their families, and find advice and support on all aspects of life with autism.

I’ve gained such a year deal of information from NAS, via videos and research articles. I recently found lots of information regarding Pathological Demand Avoidance.

www.nspcc.org.uk

This is a subject that this very close to my heart. My closest friends and family know why I am passionate for this cause. It doesn’t matter if your 3 or 33, child abuse and neglect should never happen and there is no excuse for this behaviour. These actions have so many implications, not only the child at the time, but for the rest of their lives they carry it with them and there’s evidence to suggest that certain aspects can in fact, be passed on to future generations.I wish I could give more, but I can help put a little towards helping this extremely important cause.

Helpful websites:

The following are links to websites that I’ve found very useful and helpful in the past few months, all of the following also have a Facebook page/group, and can be found via the search bar.

SPD Parents Support

A great support group for support and advice from other parents. USA site but very helpful.

www.thesensoryspectrum.com

A website dedicated to sensory kids and their parents.

www.sensoryintegration.org.uk

The SI Network (UK & Ireland) is a not-for-profit organisation, promoting education, good practice and research into the theory and practice of Ayres’ Sensory Integration.

https://www.spdstar.org/

Research and education for adults and children with SPD.

www.theisabellatrust.org

Support for parents and carers of children with ASD and/or sensory processing difficulties.

www.lemonlimeadventures.com

Author of Sensory Processing 101. Adventures in homeschooling, natural living and personal experiences.

http://www.arcos.org.uk/smile

SMILE stands for Sensation Movement Interaction in Life Experiences. We help a variety of children with profound and multiple disabilities. Lou attends here for hourly sessions, especially in the school holidays it’s amazing 🙂

For more information please see: http://wp.me/p7BVlE-Y

www.pdasociety.org.uk

Sharing information relating to Pathological Demand Avoidance syndrome.(PDA). Registered charity.

www.awarenessforautism.co.uk

Awareness For Autism is an on-line support network for families and individuals affected by autism.

www.autismwestmidlands.org.uk

The leading charity in the West Midlands for people with autism. Produced a booklet called ‘Sensory Profile.’

www.adhdfoundation.org.uk

Promoting inclusion in mental health, education & employment. Endorses University of Derby’s online course I’m currently completing in Autism, Asperger’s syndrome and ADHD.
Improving life chances through better understanding and management of ADHD, change the negative perception of ADHD into a positive.

www.time-to-change.org.uk

Aims to end stigma and discrimination experienced by people with mental health problems.

http://www.mind.org.uk/

The mental health charity. 1 in 4 people experience a mental health problem every year. Offers support and advice.

http://themighty.com/

Facing disability, illness and mental illness together, some great articles on here.

http://www.redtedart.com/

Art and craft ideas for kids.

Siblings Project

The Siblings Project – every 15th of each month can link up with photos of siblings. Please see more here:http://wp.me/p7BVlE-5v

www.learningspaceuk.co.uk

Specialised Products Aiding Child Education – great sensory toys and equipment, based in Northern Ireland but can order online.

www.cafamily.org.uk

Contact a Family (CAF) – national charity for families with disabled children.

www.familyfund.org.uk

I have written how this wonderful charity help support children with disabilities via grants. Please see: http://wp.me/p7BVlE-1u

SENDIASS

Supports both carers and young people with SEND.

www.specialneedsjungle.com

Parent-led news, information and informed opinion on special needs, disability, children’s mental & physical health conditions.

Hope that this helps 🙂

Thanks for reading 🙂

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PDA part 2!

Wow how much I missed in my last post about our experiences of ODD and PDA!
The following article popped up on my news feed this morning:
www.autism.org.uk – What is PDA?

Cue doing what I do best and scoring Lou against the PDA ticklist from the PDA Society and printing off the relevant information for her Paediatrician, I think I’m in ‘fighting mummy’ mode and “What have I got to lose?!”

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Source: http://www.pdasociety.org.uk
For children a score of 50 and over…

“Identifies individuals with an elevated risk of having a profile consistent with PDA.”

Lou scored 68!

I’ve found out so much more from the article from the National Autistic Society (NAS,)
I think it’s probably easier to bullet point what I’ve read in terms of our current situation with Lou:

● PDA is anxiety based on a need to be in control – feel secure when in control.
● Boys and girls can be equally effected, unlike Autism and Asperger’s Syndrome.
● PDA presents as controlling and dominating. Lou controls every situation, e.g up and down the stairs “I have to be first,” first to dress, first to finishing eating, will get distressed if I finish my lunch before her saying: “I wanted to be the winner.”
● In the PDA Society Booklet ‘Awareness Matters,’ it talks about children who “put on a performance, hiding all of their difficulties, for limited periods of time,” it does on to say that the people who spend most time with these children,  ie parents, notice their problems more.
● I’ve been noticing so much lately about the way in which Lou talks to us as adults, I find it quite rude and bossy. Children with PDA are often seen as ‘mini adults,’ Lou has said to me frequent times, (especially when she’s angry,) that “Mummy you are the child and I’m the adult.” Only yesterday she demanded that I “get up and get some food, now!” When I explained that this isn’t how we should ask for something she counted from 1 to 10 several times then told me to “go onto time out – NOW!” Which is the counting for processing time that we offer as parents when asking her to do something.
● Lou will tell other children how to behave but often doesn’t apply the rules to herself. E.g “you need to hold your mummies hand when crossing the road,” but she doesn’t do it herself.
● Lou will often talk in an adult way, using adult manorisms, for example, she will tell other children off, especially Moo saying “look at my face, good listening now, or its ‘Time out!’
● Lou will often blame other children for her actions,  for example she said “Billy did it” after she drew on her trousers with pen. (Name has been changed.)
● Lou will deny actions even if she’s caught red handed, for example, if a book has been ripped she’ll say “Moo did it” even if she’s been asleep upstairs or sat in a high chair nowhere near!
● Lou will show little shame or embarrassment if she throws a tantrum in public, she will not be bothered by people starting or commenting if she’s rolling around having a tantrum on a supermarket floor! It’s taken me a long time to cope with the stares and comments!
● In order to avoid a demand or request, Lou will answer politely: “No thank you,” and often says “I’ve got a sore back,” “my leg hurts.” Or “I’ve got a headache,” to avoid doing something.
● Eye contact – Lou generally uses eye contact especially if things are going her way, although she never uses eye contact when asking her to do something, often making it look like she hasn’t heard us. We have arranged for her to have a hearing test in July to rule out any hearing problems, but deep down I just know that she’s hearing us, but choosing not to listen.
● Links to SPD – another light bulb moment when I read that PDA has links to sensory difficulties in processing information in terms of light, sound,  smell, taste and touch.  This can also have an effect on Proprioception difficulties (bodily awareness) and vestibular awareness (balance.) I have had concerns about Lou’s spatial awareness and the amount of accidents she has and appears clumsy.
● Severe behavioural difficulties can be present,  can have problems controlling temper, and many people can appear passive and compliant at school, but appear very anxious at home. This describes Lou perfectly!

So where do we go now?
I’m currently testing some strategies that involve:

“a less directive and more flexible approach,” http://www.autism.org.uk

Only this morning we have tried an approach where we offer choices if Lou cannot cope with being asked to “get dressed” we then said “we’re going to leave your clothes here, you can get dressed or we’ll get Moo sorted first.
‘First’ being the operative word, make Lou spring up and collect the clothes saying: “I’ll get dressed now!”

I had used a more wordy but subtle approach with Lou last week after she demanded we go to the park and was scrutinised for “letting her control me” and “not being tough enough with her,” making me think whatever I do I’ll be judged! This is why I’m constantly researching as knowledge = understanding (which I bang on about!) But I just wish everyone could understand!

Further information.
I found that advice in getting a PDA can be found at:
www.norscaca.org.uk
At the Elizabeth Newson Centre (Autism East Midlands.)

I’m going to email for more information at

http://diagnostic-centre@autismeastmidlands.org.uk

Thanks for reading 🙂

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Pathological Demand Avoidance (PDA) and Oppositional Defiant Disorder (ODD)

Research Series:
Oppositional Defiant Disorder (ODD) and Pathological Demand Avoidance  (PDA.)

When researching ADHD, ASD and SPD I have come across ODD and PDA, particularly PDA I’ve seen a lot about recently.  I’ve not come across either of these in my childcare career, so I was keen to find out more. I’m no expert and I’m definitely not a Paediatrician! But Lou does almost tick every box of the symptoms for both, but particularly PDA. I was confused before about why she was acting in such ways and this does explain a lot. I’ve been particularly worried lately regarding Lou’s behaviour at home and recently re – referred to Family Support via a local Children’s Centre.

ODD.

Symptoms of ODD may include:

• Throwing repeated temper tantrums
• Excessively arguing with adults
• Actively refusing to comply with requests and rules
• Deliberately trying to annoy or upset others, or being easily annoyed by others
• Blaming others for your mistakes
• Having frequent outbursts of anger and resentment
• Being spiteful and seeking revenge
• Swearing or using obscene language
• Saying mean and hateful things when upset

ODD often occurs with those that have ADHD.

Source: www.webmd.boots.com

From reading these symptoms I could immediately relate to what we are currently experiencing at home.
– Lou throws up to 10 temper tantrums per day.
– She will argue with myself and partner and even pushes boundaries with my dad – who to this day I wouldn’t!
– Any requests or rules Lou is given she will usually ignore and point blank refuse. For example: “Pyjamas on” response = “no” or completely ignores and/or runs away.
– Lou will deliberately annoy and pester Moo, which she does for the majority of the day, Lou is equally annoyed if Moo enters her person space and she will usually push her away.
– Lou has anger outbursts frequently throughout the day, she will scrunch her fists together and growl loudly. Sometimes she will say “I’m really cross.” She will then often throw objects,  especially toys.
– Lou can be quite spiteful, if she’s been refused something such as food (if she’s already eaten plenty,) she will say things like “I’m going to climb over the stairgate and get it myself.” This is said in a forceful and angry manner. She will often say things like “I’m going to pick this up and hit you” if she doesn’t want to go to bed.
– We try our upmost to ensure that our children are not exposed to those who swear, which has caused a bit if controversy! But it’s for their best interests,  I don’t want Lou repeating this language, which she doesn’t understand.
– As discussed, Lou will often say hurtful things when she’s upset, these can be: “I hate you,” “don’t even look at me.”

PDA.

When looking up PDA I found the PDA society website (link below) most helpful.

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

PDA is increasingly recognised as part of the autism spectrum.

Many children avoid demands to some extent, but children with PDA do so to a far greater level than is considered usual. This is why it is called pathological.

The main features of PDA are:

• Obsessively resisting ordinary demands
• Appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
• Excessive mood swings, often switching suddenly
• Comfortable (sometimes to an extreme extent) in role play and pretending
• Language delay, seemingly as a result of passivity, but often with a good degree of ‘catch-up’
• Obsessive behaviour, often focused on people rather than things.

Many parents describe their child with PDA as a ‘Jekyll and Hyde’. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.

Source: www.pdasociety.org.uk

Many children with ASC/PDA can behave very differently with different people and in different situations.  They may be able to sufficiently hide their difficulties within the school setting and in other setting such as when visiting relatives or going to a friends house.  This can cause real difficulties for the parents because may often feel not believed, not listened to and unsupported by professionals, friends and family members.  Also this ability to mask is often at the expense of behaviour at home where the child will release this pent up anxiety.

Source: pdaguidance.wordpress.com
This article also has links to relevant information on PDA.

When reading about PDA it was like a ‘light bulb’ moment,  I’m still currently struggling to define between Lou’s difficult behaviour being due to a sensory issue or just defiant behaviour like maybe another 4 year old may also experience?

In relation to the PDA symptoms:
– Lou resists almost every ordinary demand or request (as discussed for ODD,) I find it difficult as to why she laughs and smiles when refusing to hold onto the pushchair when walking next to the road, or when she laughs and runs away wanting to be chased when it’s time to leave the park.
– Lou is very sociable, I’ve discussed in previous posts how she’s friendly to everyone and anyone, she is able to use language to impress, she copies a lot of my language and seems to be ‘an old head on young shoulders’ although she doesn’t always understand what she is saying.
– Lou has definite mood swings, she can go from really happy to angry in a few seconds. She gets extremely frustrated if things do not go her way, for example,  if she can’t get clothes off her dolls, she will fight to do it and make grunts and screams instead of asking for help. Lou will go from rolling around on the floor in full meltdown mode, to saying “I’m calm now” only a minute later!
– Lou absolutely loves role play and she will pretend to be ‘Princess Anna’ and ‘Queen Elsa,’ she talks to herself a lot and will repeat phrases she’s heard from role playing with other children. I would say that Lou does live in a bit of a fantasy world, and I can relate to this totally! I used to create senarios where I was a certain character, I was obsessed in fantasy films, and books and still am to this day!
– Lou is obsessed in Moo, she simply cannot leave her alone! If she can hear that Moo is awake from a nap she rushes upstairs full steam ahead! If they are in a room together she has to sit right next to Moo, almost sitting on top of her!

I was interested to read the article: ‘Child masks difficulties in school’ (link above,) I immediately thought “this is Lou” the fact that children with PDA can behave differently in different situations is fascinating, this is my child! Lou masks her difficulties in her childcare setting, she is better at people’s houses like my parents,  but still shows some difficulties. If I am present her behaviour is more extreme, Lou will release her anxieties from the day as soon as she reaches home. This is the reason that I’ve been fighting since Lou was 18 months old, as it has been our parenting skills that have been scrutinised constantly. I have discussed this frustration many times through previous Blog posts, and so to receive reassurance through articles, puts my mind at rest. We are extremely lucky that Lou’s new school for September are completely on board and recognise that support can be given at school so that her time at home will hopefully be more positive. I was so relieved to hear this and very greatful !

This research has proved to me even more than every behaviour has a reason, this has helped me to understand Lou more and proves to me even more that ‘research is key, knowledge is understanding.’

 

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 A girl after my own heart! “Mummy I’m just reading this story!”

Thanks for reading 🙂

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