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.


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. |  | |  |

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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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.


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… Read more »


Thank you for sharing your story with us!


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… Read more »

Deborah Rourke

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… Read more »

Special Needs Mum

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

Deborah Rourke

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


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… Read more »

nikki morris

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… Read more »

Deborah Rourke

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


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… Read more »


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… Read more »


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.

Deborah Rourke

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… Read more »

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… Read more »


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… Read more »

philosopher's stone

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,… Read more »


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,… Read more »


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… Read more »


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,… Read more »


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;… Read more »

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… Read more »


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… Read more »


I am so sorry to say Charlotte that our stories are so common. I think you were right to stand firm with your gut instinct and refuse the BSED placement. I have heard of a few positive outcomes but mostly if the child is unable to function in an environment of routine, cause, consequence & reward then it will be unsuitable. I am happy for you to contact me personally for a chat. Email me on: and I will pass you my phone number. What area do you live in? My son has ASD primary need on his statement… Read more »

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… Read more »