Your Voice

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I have been gathering other parent’s stories in light of my own experiences, and in turn have been compiling the information for a Public Engagement Project as a part of the Art Exhibition Accused: An Autism Mother http://breakfasttree.com/accused-an-autism-mother-the-art-exhibition

Please comment below to share your experiences of similar troubles with the NHS and Social Services.

Here is my story that has been receiving a lot of comments elsewhere online. 

This is the briefest version of events…but they had to start somewhere i guess. I have already contacted other Media to get them on board as i finally have something tangible to show them from the Advertiser.

The amount of parents that have come under the same scrutiny as I have is phenomenal, yet because of the nature of the allegations, the harm and the struggles we as ASD/PDA parents undergo, we remain anonymous to the outside world. This is why i have spoken out. Why i have finally put my name to this website.

 

Please, if you feel you can, share you story with us to raise awareness. I am happy for anonymous comments to be left, i am also happy for you to put your names to your experiences, and specifically it could be useful to identify the Social Services locations and Healthcare Trusts you are dealing with.

This might give us a platform to collate our difficulties with the Public Sector Authorities and give us some strength to move forward. 

YOU WONDERFUL, STRONG, ASS KICKING ASD PARENTS…Much love to you all. AND THANK YOU for all of your support and kinds words on Facebook.

NO MORE HIDING: NOW LEAVE YOUR COMMENT

Please also read this post about replies…

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9 thoughts on “Your Voice

  1. I am in Sefton, Merseyside. The average time for autism diagnosis here is 4 years….yes YEARS. My son has PDA, we did eventually get diagnosis at age 6, and it is recognised as ASD/PDA, after years of arguing and complaints about Alder Hey and the failures of one particular paediatrician. I needed Camhs’ help as my son began self harming at age 8. After a long wait we were allocated a ‘case worker’ who clearly didn’t believe PDA exists, despite the top paediatrician and their team having done all the assessments and diagnosed it. He reused to read my son’s history, and claimed he saw no evidence of ASD on the one occasion he saw him alone, despite my son refusing to engage with him, running away and trying to climb out of the window. We needed help, what we got was parent blame again, a referral to social services and an accusation of MBP, simply because of one clinician’s utter ignorance and failure to educate themselves. I was lucky, social services were actually good, and saw it for what it was, a vindictive allegation with no factual basis whatsoever, as he had not seen my son for a whole year when he made the referral, yet this man continues to practice. The HCPC said there was not enough ‘credible evidence’ to take action. Excuse me? A 3 page letter full of lies and accusations that he wrote, signed and sent to me is not enough? I am still waiting for the Health Onbudsman to investigate as Alder Hey put it down to ‘poor communication’. No, not good enough. Not by a long shot. I dread to think what might have happened if my son had been undiagnosed at that point, as so many are.

  2. Hi ive been accused of fabricating illness and uncovered camhs and elective hem education where emailing each other to say they had Concerns over my understanding of sons needs.i pulled him out of school following 12 months of caf meetings where everyone told me my son was fine at school and did not share m concerns.i was initially told son was going on Asd pathway but 12month wait following camhs initial assessment.after I quoted nice guidelines at them,they then backtracked and said attachment issue.i complained and asked for second opinion,involved mp and was sent 80 miles away for second opinion.he was diagnosed Asd with ADHD following comprehensive assessment and after I spent hundreds on sensory assessment and dyslexia to prove he did have difficulties.im currently battling for ehc plan to support him back to school.our local authority is Rotherham and through our lcal parents carers forum,I have met 2 other parents who have had same experience with Sen team, camhs and social care all working together to say fabricating parents to deny support.rotherham healthwatch are also aware of all these issues and complaints but no one seems to be holding them t account.im involved with formal complaints and intend to take it to Local government ombudsman

  3. It’s took me 6 years to get a diagnosis for my son from Worcestershire North umbrella pathway team . Was referred there after 4 failed attempts of casbat /umbrella seeking diagnosis under the Worcester team . Education and a report of recommendations from a private practice git my complaint heard as I wanted to be referred out of County. Worcestershire North eventually gave us the asd /pda diagnosis that my son needs . Yes I said needs as well , cahms tried to say his “label ” of complex needs was enough but it’s not enough to try and get support in place for now and his future . I’m not currently preparing to do battle again with Worcester cahms for my 15 year old after the normal bad parenting label has been dealt out . I’ve decided after hearing the same wording coming out of a different psychologists mouth about my older son that they must be taught to do this .BLAME THE PARENT ! And on we fight for our children!

  4. My son had to be sectioned twice to get a diagnosis of ASD ADHD and even after a year and now discharged I am fighting for his rights and further support

  5. It began after 6 years of issues with school, when SEN finally being identified, then diagnosed formally.
    I have, over four years, contacted every official, government department, Government Minister, parent advice group, specialist lawyers, CAB, NHS, Childrens charity I could find – as have many other parents. My child and I have been relentlessly abused and threatened by school and numerous LAs. False charges and fabricated documents used … You know the drill.
    I am now 24/7 carer, my child now home educated. Like so many other parents, I am a wreck, trying to hold it together to repair the damage they have caused to my child.
    I prefer not to go into what transpired in detail – most of you already know what happens.
    Suffice to say what began as a battle for educational support, advanced to a 2 year battle for my child’s life – and all the while they Pursued, abused and threatened us both. I have been through their complaints procedure to stage 3 (taken 2 years so far – even though I was raising CAMHS confirmed life endangerment and safeguarding issues)
    It is upheld they falsified documents, lied, endangered my child’s life – but nothing is going to be done about it. Pay off and promotions are usual for the offending LA staff – and signing a gagging order.
    Please, Just understand this – no one can help us because what LAs etc do is known already – all the way to the top.
    The Tri borough head of my LAs has seen the result of the complaint , and the confirmation it is accurate. She won’t even answer my emails now. Ombudsman next – which is of course the Government ombudsman. Not expecting an unbiased opinion from them.
    It is the Government ‘unofficial’ normal proceedure for LAs to, at any and all costs, to withhold EHC /SEN support. Academies particularly abuse SEN children to get them out. It is accepted common practice for LA / school to accuse parents of fabrication or abuse, to ‘groom’ and threaten children, to take children into care. They pay specialist lawyers (like Baker Small) to fight us, deprive our children, discredit us, drive us to the brink of mental breakdown and sometimes beyond.
    DO NOT TRUST ANYONE WHIO IS EMPLOYED OR FUNDED BY LA OR GOVERNMENT. They will lose their job if they stand up to the LA . They work under the duress of having to support LA direction. (this can include CAMHS, GPs, Social Workers, Familiy coaches, Schools, NSPCC, anything Government related – and many others who are “there to help” – It did for us.)
    Beware – they have no limits how far they will go to ‘win’, no integrity, no morals, no conscience. Just the backing of the Givernment.

  6. After reading your article in the paper today Bernadette, you have empowered me to finally share my whole story. I have been holding back the full details, one reason was probably due to worrying about what other people would think of me and my future job prospects because I was an Early Years Professional (of 12 years) who received a visit from Social Services, but after 6 months of writing my Blog and it opening up a whole new world for me, in terms of my writing, I now think – what have I got to lose? Other people need to hear my story, it may help others who are or have experienced the same.
    On 19th August 2015, we had a flat full of boxes ready to move house on the 22nd August. I received a call from social services, which I thought was routine due to my daughter going through an assessment for additional needs. I panicked and spoke to my mum as the social worker said someone would visit in an hour, I rang my mum (25 years Early Years experience) and because neither of us had gone through this protocol before we assumed this was routine, and told me to ring her to feedback what had been said. I opened the door to 2 social workers who quizzed me about my behaviour management and who seemed surprised at the job I’d done for the past 12 years! They quizzed me about who has contact with my child and they asked to talk to my 4 year old alone and shoved a piece of paper in my hands and as I read it in my kitchen trying to feed my 5-month-old with one hand, I was sick in my mouth – several words stuck out to me and I felt faint:
    “Daddy’s got cold hands” “Fostered” and “moderate learning difficulties.” I also read “inappropriate sexualised behaviour.” Then the penny dropped: “oh my god they think that my daughter is being abused” I had to stop myself from being sick. I had no idea that this referral had been made behind my back, our health visitor was ringing me up to ask details for what I was made to believe was an assessment for Occupational Therapy, but no it was for a referral to social services. I felt cheated after building up a rapport with this person. I also learnt from the referral that the health visitor had witnessed my child putting a crayon towards her genitals, my daughter is a very tactile and sensory child, she is a sensory seeker and we have to teach her on a daily basis about appropriate behaviours, there is absolutely no other meaning in this! this inexperienced health visitor had put 2 and 2 together and had made 10, completely blowing everything out of proportion.
    After the visit I suffered the largest panic attack I’ve experienced in my life, I rang my mum who was devastated as if I’d been made aware of the visit I would, without a doubt, have had my mum there for support. From this day I felt like the worst mother in the whole world, I was paranoid that the door bell would ring and my children will be taken from me and my life wouldn’t have any meaning anymore, I became very depressed and anxious and was on the verge of a breakdown. My partner was fostered as a child, that’s a whole different story, but no means does this have any reflection on his role as a father, “daddy has cold hands” as he rides a motor bike and when he gives my daughter a cuddle after a day at work, his hands are cold. My partner works over 40 hours a week to strive to ensure his children are fed and that his children have what he didn’t, if anything this empowers him to be the father he is, helping with mealtimes, dressing and general household tasks to help me out. After ‘the visit’ my partner was too scared to bath the children or change our babies’ nappy, this put a great deal of strain on our relationship and we were at one point on the verge of splitting up. Fast forward to August 2016, my daughter has a diagnosis of Sensory Processing Disorder with traits of ASD and ADHD, we have the full support of the school where she starts this September, our new health visitor was the first to say to me “I believe you, its not your parenting.” After she had witnessed my daughter’s behaviour at home. 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.” In March 2016 I started my own personal Blog to share our story and help to make people aware of SPD as it is far more recognised in the USA, than here in the UK, I would fight to ensure that other families do not go through what we did.
    Sorry this is so long!
    Nicki 🙂 x

  7. This is part of a Public Engagement work to accompany the ART SHOW: ACCUSED: AN AUTISM MOTHER by BERNADETTE LOUISE
    I asked people to share their stories with me, here is another PDA mother’s story.

    A MOTHER’S STORY:
    Our struggle, and constant fight…
    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.
    On 19th August 2015, we had a flat full of boxes ready to move house on the 22nd August. I received a call from social services, which I thought was routine due to my daughter going through an assessment for additional needs. I panicked and spoke to my mum as the social worker said someone would visit in an hour, I rang my mum (25 years Early Years’ experience) and because neither of us had gone through this protocol before we assumed this was routine, and told me to ring her to feed back what had been said. I opened the door to 2 social workers who quizzed me about my behaviour management and who seemed surprised at the job I’d done for the past 12 years! (I am an Early Years Teacher.) They quizzed me about who has contact with my child and they asked to talk to my 4-year-old alone, and shoved a piece of paper in my hands and as I read it in my kitchen, whilst trying to feed my 5-month-old with one hand, I was sick in my mouth. The thoughts suddenly flashed through my head: “This isn’t a routine visit.” I soon found out that they have contacted both my daughter’s Pre School and even our housing officer without my permission, to ask what kind of parent I was!
    Our health visitor had rung me a few days previously to this visit, to ask me some questions, but these questions were not related to the referral to CAMHS (this hadn’t been completed,) instead the questions I had been asked on the phone only a few days previously, were in fact for this referral to Social Services, and I was completely unaware that this was happening, if I had been made aware I could have had time to arrange for many people to be at my house to support me. I felt tricked by the health visitor, who had previously asked my daughter: “have you been naughty today?” And when I asked for her advice regarding her behaviour, she replied: “Well you know more about childcare than me, you’ve been in the job longer.” 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. I also felt cheated as I’d spoken to a Family Support worker in April 2015, who reassured me that my daughter’s behaviour was “normal for a 3-year-old.” I then went along to the local children’s centre for a Family Support consultation and then also rang back a further time, when things were spiralling at home, to be told that I would be placed on a waiting list for Family Support, when I rang back again in July 2015, I was told that my name wasn’t in fact, on the list and that I’d have to ‘self-refer,’ back to the service. I just wanted to cry, I’d been waiting months in hope for this service to support us at home. I kept thinking that if I’d had been taken seriously and not missed off the list, then this whole unannounced visit, and all of the stress, fear and worry could have been completely avoided.
    After ‘the visit’ I suffered the largest panic attack I’ve experienced in my life, I rang my mum who was devastated, as if I’d been made aware of the visit I would, without a doubt, have had my mum there for support. From this day I felt like the worst mother in the whole world, I was paranoid that the door bell would ring and my children will be taken from me and my life wouldn’t have any meaning anymore, I became very depressed and anxious and was on the verge of a breakdown. One very upsetting statement from the health visitor’s referral was that “child’s father was fostered,” my partner was fostered as a child, that’s a whole different story, but by no means does this have any reflection on his role as a father, My partner works over 40 hours a week to strive to ensure his children are fed and that his children have what he didn’t, if anything, this empowers him to be the father he is, helping with mealtimes, dressing and general household tasks to help me out. After ‘the visit’ my partner was too scared to bath the children or change our babies’ nappy, in fear that he would be judged for doing things wrong, this put a great deal of strain on our relationship and we were at one point on the verge of splitting up.
    Timeline of events since ‘The visit.’
    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 – The case worker from Social Services passed our case onto ‘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, even if I was already doing it (from background of 12 years in Early Years.) I did exactly what I was told, as I was told that if I didn’t take the advice from family support, then we would be referred back to Social Services.
    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 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 http://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 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” more than the methods that I had previously been advised to do. I speak 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. I ask school for advice on PDA and they advise that because they don’t see these traits at school then “there’s not a lot they can do.”
    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.
    Dear Professionals,
    I masked my difficulties at school and I spent my whole life being misunderstood.
    I even kept how I really felt from my parents.
    I’m now an 34 year old who is starting an ASD assessment,
    You ask: “How do you know your daughter feels this way?”
    I say: “Because I feel the same, now, and I felt exactly the same as a child…”

    Nicki Perrins ~ Sensory Sensitive Mummy

    For more information on our journey please visit:
    Blog: http://www.sensorysensitivemummy2.wordpress.com
    Facebook: http://www.facebook.com/sensorysensitivemummy/
    Twitter: http://www.twitter.com/sensorysenmummy/

    This is part of a Public Engagement work to accompany the ART SHOW: ACCUSED: AN AUTISM MOTHER by BERNADETTE LOUISE
    http://breakfasttree.com/autism-spoken-word-event-at-the-artrix

  8. This is part of a Public Engagement work to accompany the ART SHOW: ACCUSED: AN AUTISM MOTHER by BERNADETTE LOUISE
    I asked people to share their stories with me, here is another PDA mother’s story.

    A MOTHER’S STORY:
    My Son was diagnosed with Autism with specific difficulties in relation to Pathological Demand Avoidance when he was four and a half years old. This diagnosis was obtained privately, although it was subsequently (and very quickly) fully endorsed by the NHS – by the same paediatrician who had been reviewing my son since he was twenty-one months old – by the same paediatrician who had failed to organise any formal assessments for Autism for my Son during the nearly three year period that he was under her review. 

    I first voiced concerns about my Son’s development with NHS “professionals” when he was just ten months old. As a baby he did not like to be cuddled, comforted or held except on his terms. He did not like to leave the house, did not settle easily to sleep and did not take well to weaning. He also suffered from night terrors regularly from the age of six months. He was a little late with his gross motor skills but always caught up when he was ready. At ten months old he could not bare weight on his legs at all and was not babbling. His health visitor was not concerned but wanted to keep him under review. At eighteen months old my concerns increased as my Son could not walk, could not stand unsupported, had speech delays and was showing aggression towards me in particular. He was however confusing us because in other ways he seemed to be a highly intelligent little boy. Perhaps even a little too clever. The Health Visitor and GP referred him to Speech & Language Therapy, to Physiotherapy and to a Paediatrician. 

    The NHS Paediatrician first met my Son when he was twenty-one months old. By this time he was walking and had been discharged by Physiotherapy. The report following that meeting highlights my own concerns regarding his development – including his gross motor delays, clumsiness, speech delays, night terrors, aggression and occasional rocking, hand flapping and lining up of toys. I now appreciate that some of these concerns are “red flags” for Autism. The outcome of this meeting however was – do nothing and review again in nine months time. That outcome became a running theme throughout our dealings with the NHS. 

    Speech & Language Therapy first reviewed my Son when he was two. Their report highlighted concerns including a short attention span. However, as my Son’s nursery had not identified any concerns he was subsequently discharged without being formally assessed for any condition.

    Shortly afterwards a new health visitor came into our lives. She listened to my worries concerning my Son’s development and seemed keen to help. However this “help” turned out to be aimed at my parenting skills rather than giving consideration to any possible conditions that my Son might be suffering with. I was asked to attend a Positive Parenting course (which I did – and the strategies made my Son’s behaviour worse) and sent off to my GP to discuss depression (the GP told me that I wasn’t depressed and that all children are difficult). 

    I continued to press the health visitor for support. What I got was tea and sympathy – lots of pleasant chat but no action. The paediatrician duly reviewed my Son again aged thirty-four months and noted down the same concerns that I had previously raised. The outcome again was – do nothing, review in six months. At the same time the health visitor carried out a routine developmental check and found no concerns – she was delighted with his progress and considered that he had fully caught up. 

    My Son was next reviewed by the paediatrician when he was forty months old. Once again I raised concerns – short attention span, aggressive behaviour, needing to be in charge, demand avoidant. The paediatrician declared him to be neurologically “normal” but wanted to review him again in twelve months time.

    By this point I was exhausted, frustrated and frightened. My Son’s behaviour was becoming increasingly more difficult and I knew that there was something amiss in his development, something just didn’t seem right, but no-one was listening. No-one was interested in carrying out any sort of assessment. No-one was interested in offering any sort of explanation for his history of developmental delays and subsequent catch ups. No-one was doing anything and I didn’t know where else to turn. I broke down in front of the health visitor and begged her to help me. She kindly promised that she would but also suggested that I may not have bonded with my Son. My beautiful, lovely, clever Son. I believed her and was heartbroken. She actually did nothing to help – she left our area several months later and I never heard from her again. 

    Shortly afterwards we were allocated a new health visitor. She visited me to carry out a developmental check on my baby and shortly before she left she asked if I had any concerns regarding my eldest Son. I sighed…I hadn’t got the energy to go through it all again…but explained briefly, yes I had, but no-one had listened. Thankfully this health visitor did listen. She was the first person to say “Yes, I see what you see”. She undertook an age appropriate developmental check and my Son passed, with flying colours. BUT because I had raised concerns she produced a second type of developmental check, a social check, and he failed. She went over the paediatrician’s head and referred my son to the Child Development Team (the CDT). I was so relieved, finally someone was listening, finally we were getting somewhere.  I was hopeful. 

    I was wrong. The CDT never asked to meet my Son in person and he was not invited to attend any form of assessment. He was discussed at one meeting, based on his paperwork, and referred to Occupational Therapy. 

    By this point I was scared. School start was looming in the distance and I was afraid that my Son would be labelled “naughty” and written off without a proper chance of an education. I also could not continue pushing him to conform, as I was advised to do, as this seemed to be making the behaviour worse. Every single day was a challenge. I had to know what was wrong. Could he have Autism or something else, or was it all in my own head? I sought out an initial assessment privately – the recommendation was that there was sufficient concern to go ahead with a full assessment for Autism. 

    Armed with this recommendation I went straight back to the NHS paediatrician and presented her with the report. Suddenly she was listening. At last my Son, now aged fifty months, was referred on to the Umbrella Pathway and back to Speech & Language Therapy for formal assessment.

    By this time though, I had lost all faith in the NHS system. I was right. At age fifty-five months my Son was diagnosed privately, following very thorough and detailed assessments, with Autism. I never heard from the Umbrella Pathway and Speech & Language Therapy never did carry out a formal assessment.

    The NHS failed my Son and failed my family. I am sorry to say that I would urge anyone with similar worries about their child to seek a private diagnosis. Waiting for the NHS to listen and then to action is wasting valuable years and our children deserve better. So much better. 

    This is part of a Public Engagement work to accompany the ART SHOW: ACCUSED: AN AUTISM MOTHER by BERNADETTE LOUISE
    http://breakfasttree.com/autism-spoken-word-event-at-the-artrix

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