Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It's a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

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From day one, my son suffered from a bloating and stomach pains, which meant for the first two years of his life he only cat napped for a couple of hours at a time; this extreme tiredness felt like torture. When he was almost 10 months old, a doctor suspected he might have Hirschsprung's diseasewhich led to him under-going a bowel biopsy and a barium x-ray, results of which thankfully were both negative, but the experience had taken its toll and left him suffering further distress.

He was referred to a dietician when he was 26 months old who suggested I put him on a wheat free, gluten free diet. Less wheat did help a little with the bloating; after a while I put him back on a normal diet reducing his wheat intake. My son had terrible outbursts due to frustration and confusion, head banging on floor, biting, hitting, grabbing and hurling anything he could reach.

His speech was poor; by 19 months he had four words and by 24 months it had increased to around eight. His hearing tests were all good. He used to point for things he wanted, or led me by the hand. His speech started to improve slowly from the age of three. He also had difficulties with his gross motor skills (balance, stepping over objects, hoping, running), an occupational assessment put this down to poor gross motor skills and a stiff gait in his left leg. Mother and toddler groups were a nightmare due to his aggression - he was like a whirlwind of destruction which, of course, resulted in complaints from other parents. This continued on into nursery, where he was put on School Action Plus.

Home life became difficult, in so many ways. His sister, four years older, struggled with the constant crying and meltdowns from her brother, other family members struggled to understand and put his behaviour down to terrible 2,3,4’s, some friends stopped seeing us as they didn’t want him playing with their children due to his aggression. Hairline cracks within my marriage grew into a canyon and I struggled to know what to do for the best.

My son was initially diagnosed with speech and language delay. He first attended a mainstream school with a speech and language unit attached, after only one week he had been permanently excluded on grounds of health and safety the other children. Another smaller mainstream school offered to take him, they even helped to get his statement of needs relooked at, and he was given a full-time one to one teaching assistant. However, after almost four weeks and several incidences, the school admitted they were also unable to cope.

Another doctor assessed my son, she recognised that he had autistic tendencies combined with speech disorder. His statement was adjusted to better meet his needs and then began the search for another school. During that time he remained at home.

So many times I was told, “Your son's not autistic he gives eye contact”. Other times I was asked, “Does that mean your son is really intelligent?” But more difficult to hear was, “He’s just strong willed, a good smack on the bottom will sort him” A local special needs school was found, actually it was a unit attached to an EBD (emotional behaviour disorder) school. With only five children in the class, one teacher and two assistants, I hoped things would work out for him, it certainly looked that way to begin with.

Then the calls started… “Um, it’s your son's school here, he’s not having a good day; can you come and get him?” This went on and on, not only was this very negative and disruptive for my son, I repeatedly had to take more time off work. I also saw an increase in his meltdowns, and unfortunately the copying from other boys of inappropriate words (such a the F word). A new term, with new staff, resulted in an incident and once again he was excluded.

After an emergency review meeting, which raised areas of failings by the school, we were back to square one. After three separate school exclusions from three different types of schools, I had to give up my job for a third time. He remained at home for eight months whilst being rejected by many schools. The autistic specific schools we viewed didn’t seem suitable, as his autism was mild. Other schools turned him down because he was unable to access the curriculum, and many schools rejected him because of his aggression.

After a CAMHS report, a Meath School private disability assessment, a battle with the County Council SEN department regarding their failings, an Ombudsman investigation, a newspaper article, some campaigns involving letters to my local MP, amongst others, eventually a new school was found, but is ‘out of county’.

Where are we today now that my son is nine years old?... My son has a condition called Pathological Demand Avoidance Syndrome, which is increasingly recognised as part of the autistic spectrum. He is mentally five years old, with Speech Language Communication Disorder and Dyslexic. He is still unable to access the curriculum, struggles to comprehend simple requests, has no concept of time, suffers from IBS and struggles to understand social play.

He currently goes to a special needs boy’s school who have some experience with ASD, EBD, ADHD, ODD etc. But more importantly, they have a flexible manner with an open-minded approach in a nurturing, calm and inclusive environment. To-date, both my son and his school teachers/carers are coping well and learning from each other every day. But it isn’t plain sailing, as his school is in another county and because it’s almost an hours drive away.

There were problems with travelling back and forth daily, so he is currently weekly boarding at the school, the same as the majority of the other boys. There has been much heartache for me, letting go and trusting in others to care for and understand my beautiful boy, although it now helps being able to telephone him every evening. I also worry about the possible increase in his anxiety levels due to separation from the family.

There certainly have been some positives, my daughter is calmer and happier and we have respite time together during the week and it has been lovely to be able to focus 100% on her for the first time in years. Although the children’s father and I have separated, we remain living near each other, have become good friends and he has a wonderful relationship with his children and is fully involved in their lives. We both feel that our son has given us the opportunity to look at life with huge appreciation for the things that many people take for granted.

Our son has been our teacher, we have learned the art of patience, acceptance, to be open-minded, to look closely at ourselves and how to interact in a new way with both our children. My son helped me to realise who I am and what I am capable of; he gave me my voice, he helped me find my inner spirit, strength and passion, and has made me a better person. I am a strong advocate for autism and am in relentless pursuit to raise awareness about PDA.

What can PDA look like…

  • Panic attacks /challenging behaviour:  

Aggressive outbursts, kicking, biting, spitting, hitting, swearing, screaming, throwing things (fight or flight, often with no obvious triggers)

  • Communication abnormalities:  

Echolalic speech, literal understanding of speech, neologisms (using idiosyncratic words instead of conventional speech), language disorder to varying degrees, inappropriate speech for social context

  • Social communication:

Inappropriate play, lack of turn taking and difficulty understanding social rules and requests, difficulties knowing how to react to another person’s behaviour, difficulties accepting that there may be other perspectives, not just a single perspective, limited gesturing

  • Rigid thinking
  • Accumulative levels of stress
  • High anxiety and low self esteem
  • Sensory issues / overstimulation, materials, noise, sunlight, temperature, food

Early History of PDA Elizabeth Newson first began to look at PDA as a specific syndrome in the 1980′s when certain children referred to the Child Development Clinic at Nottingham University appeared to display and share many of the same characteristics. These children had often been referred because they seemed to show many autistic traits but were not typical in their presentation like those with classical autism or Asperger Syndrome because of the child’s imaginative ability, especially in non-echolalic role play; often the child seemed unusually sociable, though in an “odd” way, and language development was atypical of autism and less pragmatically disordered than in Asperger’s syndrome. They had often been labelled as ‘Atypical Autism‘ or Pervasive Developmental Disorder – Not Otherwise Specified. Both of these terms were felt by parents to be unhelpful. She wrote up her findings in several papers based on increasingly larger groups of children. This culminated in a proposal for PDA being recognised as a separate syndrome within the Pervasive Developmental Disorders in 2003 published in the Archives of Diseases in Childhood.

http://www.pdacontact.org.uk/ | http://www.facebook.com/groups/7165353156/  | http://adc.bmj.com/content/88/7/595.full | http://advocate4pda.wordpress.com/2012/02/05/wikipedia-for-pda/  | http://www.youtube.com/watch?v=QwtkzBoY01M

Above is a photo of my wonderful son, and below, a photo taken at the National Autistic Society Spectrum Ball, where Tony Hadley (Spandau Ballet) kindly agreed to have pictures taken to help raise awareness for children with Pathological Demand Avoidance Syndrome.

Tania Tirraoro
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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome. Trustee, Genetic Alliance UK.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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  • My son has PDA amongst other issues, and we have been through many of the same difficulties, with the exception of school exclusion as our primary was exceptionally accomodating and tolerant. After going to tribunal, he goes to a specialist residential school for academically able kids on the autistic spectrum, and he is doing great! He boards fortnightly, which we have got used to and there is far less strain on the family as a whole. I hope that the life skills he learns there will give him a far greater chance of participating in adult life.

  • Tanya

    I admire your bravery… It is true that these things only happen to those who can cope!. Someone once told me that. I know what a hugh struggle having a child with special needs can place on the whole family – my daughter felt jealous of my son and his difficulties… then she felt that she was ‘bad’. I am glad that you are able to spend quality time with your daughter – it is important. My son had numerous physical and emotional difficulties and anxieties and it is so hard because you feel that you are being pulled in so many directions and torn. I always made sure that every Saturday I would take my daughter to town and treat her with cake and cream ofcourse. It is true that these difficulties can also break up a marriage…. I am currently going through a divorce as the strain has taken such a toll on my marriage that myself and my husband just found that we had nothing to talk about anymore.

    Again I really admire you and I wish your family all the best for the future. I wish I could work with your son…. He sounds like a child who has been through a really tough time and just needs someone compassionate.

  • Thank you for sharing your story with us!

  • Ann

    Wow what a story, thanks for sharing. It is clear you are a very dedicated Mum and your beautiful boy is so lucky to have you. It’s so sad that so many people have to go through so much heartache before the right support is found. I hope you have finally found your safe haven for you son and he and your family can flourish.
    Be proud! 🙂

  • Your story is heartbreaking and so familiar! My son was diagnosed with ASD at 7, but CAMHS said it was not classic autism as his speech was excellent, his eye contact good and his intelligence academically was average for his age in most area’s.

    My son had frequent ‘meltdowns’ and often the trigger was unknown, he eould self harm or become aggressive or run away and he had huge problems at school mainly with behaviour and his relationships with classmates. He had no real friends although some of the children were wonderfully tolerant. (kids of parent I had become friends with) Like you we also had friends become distant due to my son’s behaviour and his biological father has never really had much involvement either. My son was for many years a frightened and confused child.

    Despite his diagnosis and SEN he was regularly left out of events, trips and excursions and even with 1-1 support i was regularly called to collect him and take him home eith the excuse he “wasnt coping” ehen in reality it was the school failing to cope….the head and I had many disagreements and meetings over the treatment of my son and many times I considered moving him but no other school would take him and at the time he had no statement. He was regularly excluded and eventually was forced to leave at the end of year 5 and was given a place at a specialist school pending a statement going through.

    Like you I had problems with my job and my family life suffered, especially for my young daughter. Luckily my dad and partner are brilliant, my rocks when I’m falling apart…

    Eventually with the help and patience of his Autism support worker she found that PDA strategies work better than the ASD ones and I fought to get his statement adjusted. He now attends a school for children with emotional and behavioural issues (including ASD and ADHD etc) and is doing great. He went on his first ever school trip in May (5 days to Dol-y-moch in Wales) and sat his S.A.T’s with no issues. Socially and emotionally he is 5 not 11, academically and intellectually he is about 13-14 so the balance is hard but we are getting there!

    Thank you for sharing your story….it’s reassuring to know we are not alone.

  • Thank you Jacqui, Tanya, snowflkeswild, Ann and mspolecat, your kind words of support mean a huge amount to me. My appreciation and best wishes to you all xx

  • Janice Shand

    Hi, my son was in a similair situation to yours and was excluded from his first nursery at the age of 3, then went to another nursery mornings only which shut down after 2 months.
    He then went to another nursery in a primary school was was regularly sent home or excluded for a few days. He wanted to be like the other children but did not fit it and struggled emotionally and physically being at school. He was bullied by his first teacher in juniors and by other children.
    He was diagnosed with Asperger’s syndrome and Patholoical Demand Avoidance Syndrome at nine and a half and moved to a school with provision for autistic kids until he moved to high school which has enhanced provision for autistic kids. Over the years I have seen a great change in my wonderful boy and he is growing into a lovely young man who I am very proud of.
    We never knew how things would turn out and neither did the staff the the Elizabeth Newsome Centre after his diagnosis. I am proud to say he has changed in so many wonderful ways. He has written a poem about his mind and it was entered into a Creat! Arts for Autism competition at the Beechwood College in Cardiff. Out of 550 entries he has come in the final 24 and is to attend an awards ceremony on 6th July. I am elated as he has proved so many people wrong. Keep going and hopefully your son will change to.

    • Special Needs Mum

      Thank you for sharing this, Janice and good luck to you and your son. Tania

    • Thank you Janice and congratulations to your son, that is a fantastic achievement, you are both an inspiration to others 😉

  • ayan

    Thank you so much for sharing this. I have a nephew who is 6 diagnosed with autism but looks more like PDA which he has been labelled with also. My nearly 3 year old is also showing less aggressive signs of this syndrome coupled with severe speech and language delay and gross motor delay.
    My sister and I are about to a strict regime of gfcf/GAPS diet, biomedical supplements, oxygen therapy, homeopathy and b12 injections to try and cure our children. We are also incorperating behaviour therapy and primative reflex excersices such as ‘braingym’.
    After much research we have come to the conclusion that our children’s severe allergies, colic, reflux and gut problems could be the cause of these organic brain dysfunction (essentially PDA is an organic brain dysfunction/panic disorder).
    I hope we see good results, anyone who wants updates can email me on [email protected] and I will be as honest as possible about whether we see any results with these interventions. I pray to God that we do.

  • hi,im new here but i have been going back and forth with my daughter for over 7 years now at c.a.m.h.m.s. in cardiff and have told them my daughter is different….she is very good in school and has never been penalised there …however she is very different at home with anxiety etc all you have said above….she is very manipulating and controlling.makes me out 2 be a bad parent at camhs meetings ..they have diagnosed her with severe o.d.d. which i doubted from the start….im so frustrated as it leaves me as a parent being looked upon as a bad parent yet i have no control over this little 10 year old girl.yet she has now been put on schizophreniac medication to control her moods….omg…..please help….any advice would be very welcome…thanks
    nic

    • I am extremely sorry to have missed your post Nic. If you haven’t already, please join our facebook group – Pathological Demand Avoidance (PDA) where you can access support and advice or PDA contact group is also another wonderful support group. All the very best

  • beneficii

    I’m an adult, an American born and raised, who was diagnosed with ADHD when I was 5/6, with PDD and conduct disorder when I was 8/9, and Asperger syndrome when I was 13. I had substantial speech delays, and violent outbursts up until age 14, when I was locked in a mental hospital for 6 months, after which I greatly improved. In a record written when I was 8/9, I was “said to have autistic features” and my records said I seemed to have “unusual features” in my development. I also had “uniquely focused and disordered” cognitive processing that caused me to “misinterpret environmental cues.” I can appear normal socially, find that I frequently imitate the mannerisms and tones of voices of others (even at this age!), and can manipulate to an extent, but I still find myself greatly confused in social situations, often developing great anxiety, and these issues seem to go back to when I was really little. Because of that, it seems PDA fits me to a tee, and I am still the same way in many respects as the children you described. Because no one ever heard of it, however, I don’t think I ever got the specific support for it, and it seems to be recognized only in the U.K.

    I wonder what I should do. I do see a psychologist.

    • Thank you for sharing Beneficii. It is such a shame that even in the UK PDA is ignored by many of the autistic support groups. The medical profession / education professionals / therapists etc few have heard of it and those that have hardly acknowledge it. Only recently PDA is starting to be spoken about in small isolated pockets dotted around the country where parents are creating noise about the lack of educational care and support. I recently informed my doctor about PDA and asked that he speak about it to his colleagues, in the hope that they will speak about it to others and so in time more and more people will become better informed. Wishing you all the best.

  • This story is very similar to that of famiies whose boys have Klinefelter Syndrome (XXY) and XXYY Syndrome – genetic conditions. Did this parent get advice to have genetic testing? It is important to note that children with many genetic disorders have overlapping issues like this. I came here because a parent in our XXYY group has noted that PDA is very familiar to we parents of boys with XXYY. Just a thought. Always ask for genetic testing.

    • Dear Renee, Thank you for informing us about Klinefelter Syndrome, something which I personally had not heard of before. Very interesting and certainly worth looking into further. Kind regards

  • Oh my gosh. This sounds so much like my daughter. She’s about to be assessed for AS specifically because of her aggressive behavior and inability to take on board other people’s perspectives. I have had so many issues with getting health care professionals to take her needs seriously. From one mother to another, I thank you so much for posting about this. Your story has opened my eyes and may just have given me the key to unlocking further help for my girl. A thousand times thank you.

    • With the wonderful help from Special Needs Jungle, I am really happy to be able to shine a brighter light on PDA and reach more parents. Having a signpost to guide you and your child is the start of a long road. Personally it helped me to better understand my son, knowing what his needs are has given me the confidence to push for, and keep pushing for the right kind of educational support; it helps to know what questions to ask; to be able to identify a support group when I felt alone. My son doesn’t have the option to change his ways, have a flexible approach or be able to explain what its like living with PDA – I can, I have and I will continue to tell people about PDA, I’m his mum and thats my job, my love and my life. Remember to appreciate the happy times, learn from the difficult bits and at every hurdle tell yourself…’This to shall pass’ Wishing all of you and your lovely children the very best for the future x

  • Carole Bailey

    Thank you for sharing your story it certainly brought a lump to my throat! my son is 10 and a half and was excluded from school in may this year our school was rubbish and the head refused to request a statement as ‘he is too intelligent” we now have a statement but only because we asked for it.I think my son has PDA and we are waiting diagnosis we have been told he may have aspergers and/or ADHD.we have a local autistic school who will take him but only with a ASD diagnosis so are currently waiting for that been 4 months at least and he is now 5th on the list! Because of our schools approach it has made our life hell at times- my son has had no full time education since march- schooling at home isn’t too successful .only this morning he had a meltdown as i wouldn’t swap a toy he bought the other day with his pocket money that ‘he doesn’t want” for a toy on his xmas list that he knows we have got him- for the first time i was scared as he can be very aggressive due to his high frustration levels- he did throw his toy at me but his anger was directed at the washing on the airer and a box of cereal! after 10 mins in his bed room(he went up on his own after i eventually shouted at him )he came down perfectly calm and hasn’t even mentioned the incident!Thank you again at least i know i not the only Mum experiencing this! Best wishes to you and your family .

    • Hi Carole, sorry for the delay in acknowledging your post. Christmas is such a difficult time, and even harder for our children who’s anxiety buckets are seriously overspilling. As our children get older, bigger, stronger, the managing of meltdowns needs to be revisited and action plans put into place. However, personally I feel my sons meltdowns are related to his anxieties, his fears are because he doesn’t understand the environment around him and so he is always guarded and ready to defend. I feel in time the more he understands the less frustrated and confused he will be and this will result in fewer panic attacks (which is all a meltdown is). Many GP’s, EP’s, Paediatricians etc. simply don’t understand this condition or acknowledge it, and depending where you live in the country/world it is described in many different ways, but what ever they call it, you are definitely not alone, wishing you all the very best too x

      • Your comment ‘guarded and ready to defend’ struck a cord. My son is now 21 and at university, studying philosophy and computer science. He was initially diagnosed with ADHD at 5 and then Aspergers at 7.As others have said, it was a battle to get anyone to put a label on him. He was in mainstream school all the way as he was “too bright” to be statemented. He was never excluded but was both bullied and disruptive in class. We were called into school frequently “to explain” and he would phone to be collected when it got too much, often several times a week.
        He has an amazing level of self awareness and a great sense of humour. He personalised our phone message for when he called to be “I want to come home, nooow!” He would have days off on end and miss school trips due to IB. I developed a business so I could work from home as I was on call to collect him at a moment’s notice. – there are always good things that come from the bad, I now use my in-depth knowledge of SEN in my work.

        We moved around the world with my husband’s job a lot so our son had to become flexible and adaptable in his thinking – something his early Pysch team never imagined he would be capable of, and in fact strongly counselled us against doing. I actually think that ultimately although it was incredibly stressful for us as a family, and for our son, the constant change has been the making of him. I cannot imagine him achieving all he has without being challenged to adapt and reflect every step of the way. It nearly cost me our marriage, and my relationship with our twin daughters (who felt neglected and generally hard done by) but we’re out the other side and the future is looking bright.

        I hadn’t heard of PDA until this morning and so much of our son’s behaviours, in the light of my new knowledge, are so much more readily explained as resulting from acute anxiety when asked to do something. He would not wear jeans for years as they were ” too restrictive and he couldn’t kick anyone” , if he needed to defend himself. His behaviour has improved massively over the years, but he still has his moments when stress levels get too high. He now knows to take himself off to his room to de-stress, so he won’t hurt anyone, but if we ask how his studies are going in the wrong way (for that day) or suggest he gets back to his studies, becomes confrontational. He knows he is becoming anxious and tells us to back off as it is counter productive, so he knows what he needs us not to do, but we don’t yet know how best to help. I have sent my husband the links to this page and the NAS page so we both know what we’re talking about and will try out some new approaches. I am hopeful we have found the missing link. Thank you for your posts.

      • bogmyrtle

        Your comment ‘guarded and ready to defend’ struck a cord. My son is now 21 and at university, studying philosophy and computer science. He was initially diagnosed with ADHD at 5 and then Aspergers at 7.As others have said, it was a battle to get anyone to put a label on him. He was in mainstream school all the way as he was “too bright” to be statemented. He was never excluded but was both bullied and disruptive in class. We were called into school frequently “to explain” and he would phone to be collected when it got too much, often several times a week.
        He has an amazing level of self awareness and a great sense of humour. He personalised our phone message for when he called to be “I want to come home, nooow!” He would have days off on end and miss school trips due to IB. I developed a business so I could work from home as I was on call to collect him at a moment’s notice. – there are always good things that come from the bad, I now use my in-depth knowledge of SEN in my work.

        We moved around the world with my husband’s job a lot so our son had to become flexible and adaptable in his thinking – something his early Pysch team never imagined he would be capable of, and in fact strongly counselled us against doing. I actually think that ultimately although it was incredibly stressful for us as a family, and for our son, the constant change has been the making of him. I cannot imagine him achieving all he has without being challenged to adapt and reflect every step of the way. It nearly cost me our marriage, and my relationship with our twin daughters (who felt neglected and generally hard done by) but we’re out the other side and the future is looking bright.

        I hadn’t heard of PDA until this morning and so much of our son’s behaviours, in the light of my new knowledge, are so much more readily explained as resulting from acute anxiety when asked to do something. He would not wear jeans for years as they were ” too restrictive and he couldn’t kick anyone” , if he needed to defend himself. His behaviour has improved massively over the years, but he still has his moments when stress levels get too high. He now knows to take himself off to his room to de-stress, so he won’t hurt anyone, but if we ask how his studies are going in the wrong way (for that day) or suggest he gets back to his studies, becomes confrontational. He knows he is becoming anxious and tells us to back off as it is counter productive, so he knows what he needs us not to do, but we don’t yet know how best to help. I have sent my husband the links to this page and the NAS page so we both know what we’re talking about and will try out some new approaches. I am hopeful we have found the missing link. Thank you for your posts.

  • Alybongo

    i have been having many problems with my beautiful boy since he was 15 months old, he is now nearly 5. im soo exhausted with him and still awaiting a statement/label/diagnosis. we had our first CAMHS appointment this week its taken a yr. im out of stratergies and just applied for a yrs leave from university to spend more time with Harry in case its me being a bad parent. i am a lone parent with no support from his Father and feel so empty within. im hoping for a miricle but believe my boy has PDAS. thank you for making this story viewable.
    good luck to you all with your children

    • Hi Alybongo, It is extremely difficult with little support, the tiredness and frustration can leave you not knowing which way to turn; but you are certainly not a bad parent, if anything you have assessed the situation well and taking a year out to pay your full attention to Harry’s needs is the sign of a brilliant mother – You are his miracle. Wishing you both all the very best x

  • Gayle Jowett

    I have my daughters( part 2) CAMHS Communication Clinic appointment in 3 weeks. Part one resulted in being told she may be on the spectrum however because she is a girl it is difficult to provide a diagnosis. She is 11. She has huge emotional, behavioral, social and communication difficulties. She has been excluded from school on numerous occaisions because her ‘meltdowns’ have been too much. I am in no doubt that she has PDA. I’ve known she has additional support needs since she was 3. I’ve pleaded and fought with my G.P, Psychologists, Health Visitors, Speech and Language therapists, Educational Psychologists etc for years. It doesn’t help that I’ve worked with autistic adults with behavioural difficulties for 20 years either, although you’d think I might have been taken seriously.
    Routines don’t help her anxieties, instead I tend to try to redirect her and reduce the demands I place on her. She is such a good negotiator and puts so much effort into not doing the things she is asked to do. Her anxiety levels and behaviour can flip from moment to moment which has resulted in very low self esteem and very little tollerance from her peers. She treets other children as objects and is unable to play with other children, instead she has a very fixed idea of what friendship is and things have to be on her terms. She is a very lonely girl and has very low self image. She starts Secondary School after the summer. She currently has additional support in the classroom or in the schools behaviour support base for 17 hours per week.There are 3 children in total. At secondary school they have made no provision for additional support. Academicly she is underperforming because her behaviour has meant she has missed so much formal learning. If we don’t get a diagnosis in 3 weeks then she will go to secondary school and they will have no real understanding of her needs. The school want to ‘see how she gets on’ before they put anything in place. Basically she will be in an environment where she is being set up to fail, and that will be explosive. I can’t believe they will do that to her. I can’t believe she will be put in an environment wher she can’t deal with noise, crowds, change, rules, structure, demands etc to see ‘how she get’s on.
    There is a common theme in all the comments on this page. All the children have had to endure horrific experiences before they have been supported appropriately. Families have fallen apart ( yes my marriage went under too – my ex husband needed someone to blame to make sence of it all, Thankfully 5 years later we seem to be on the same page)
    My daughter, well she will continue to struggle daily, continue to feel she is at odds with the world and that everyone hates her. She will continue to have meltdowns and her learning will continue to be affected. It all hinges on a diagnosis. I find that ironic when we’re encouraged to ‘see the person and not the label’ Unfortunately without ‘the label’ the services and support don’t get put in place.
    Wish us luck XX

    • Hi Gayle, I absolutely wish you both tones of luck, I hope you get the outcome and support you need and deserve. It’s so true, all have endured horrific experiences and I struggle to understand a system that operates on failings + emergencies instead of focusing their efforts on prevention + intervention. The heart-wrenching truth is that even after diagnosis; whatever it states on your childs statement of special educational needs, it really comes down to the efforts and resources of the individual schools. But that said, at least it is a starting point for better understanding a childs needs; a step forward to getting support; a document which can focus discussions and goals. All the very best x

  • Banu Phillips

    I have a 7 year old son with Fragile X Syndrome . I was wondering if your son has ever been tested for the syndrome. The test is a straightforward blood test and mother gets to be tested too.
    Your son’s difficulties and symptoms are very similar to a typical child with Fragile X Syndrome. ADHD, echolaila, poor speech and language development and challenging behaviour always comes with this syndrome. Children with fragile x are also known for their big appetite and fast bowel movement.
    They may have some physical clues; longish face, protruding ears, flexible joints but they look cute!
    I recommend The Fragile X Society online for you get more info if interested.
    I hope life becomes less confusing for your son and less tiresome for you. Best wishes!

    • Hi Banu, Thank you for your reply and good wishes. Fragile X is a syndrome which has already been ruled out with my son, along with ADHD. I understand that due to similar traits there are several syndromes which can appear similar on the surface. Pathological Demand Avoidance Syndrome is a very clear diagnosis of my sons condition, one that needs better understanding, more research and a clear campaign to get the rigid educational field rethinking their teaching strategies. I wish you and your son all the best for the future.

  • Susan Moody

    Reading this was like I had wrote it myself in the next couple of years. Some small differences with medical history and speech and types of school provisions but minimal.
    Andy is 6 and has has 3 school placements failed and just starting our battle for an independent special school which is an hour away. This had me close to tears. Your so brave letting your son board, that’s really heartbreaking and one of my biggest fears xx

  • Charlotte Wagner

    I really am getting down lately Leo is going to be 6 in January, he was diagnosed with ASD at 4 after a really long struggle since he was 1, he is currently on his 4th school and they are saying they cannot meet his needs this is an ASD specialist school but they are saying they cannot not meet needs of PDA I literally don’t know what to do anymore they told me to look at a behaviour specialist school so I did and I hated it, the head said to me we are very strict and have consequences for everything and you need to do the same at home do you discipline Leo ? I’m sick of people thinking the way he behaves is because of me, I have tried so hard and tried everything and nothing works, PDA 100% fits Leo but we need to try and get a diagnosis I feel like no one knows enough about it and they said his ASD diagnosis will get him into a school but it’s not helped he’s compkenetly different to all the children at this ASD school and they cannot help him, I feel like he needs a diagnosis of PDA for people to actually try and understand him and know the right way to approach Leo and talk to him x any advice anyone

  • sarah moran

    Hi Debra,
    I have just emailed you it would be good to find out which school your son now attends and how you secured a place. My son is at the moment in a ESBD secondary school (the same one your son used to attend) and I’m 100% sure he has PDA in fact the teacher said Ethan is like another boy I used to teach- and lent me a book that I think belongs to you. I read it this weekend and everything makes sense from sensory needs to strategies that work to the dreaded meltdowns. It even says in a report Ethan decided he would roll around on the floor and pretend he was a dog today because dogs can’t write. He has some pretty ingenious work avoidance strategies under his belt (or should I say collar)