Yvonne Newbold

What happens when you think your child might have a disability or a special need of some sort, and you approach the relevant professionals for help and support? It would be nice to think that families in that situation are fast-tracked towards some sort of specialist, where their child could be diagnosed, with the information being delivered in a sensitive manner with lots of kindness and signposting towards extra help, therapies, treatments and on-going support.

However, that all takes time and funding, and although it can be relatively easy for the right specialist to diagnose something very visible and obvious, some children’s disabilities are far less apparent. Developmental conditions such as Autism, ADHD, Sensory Processing Disorder or Pathological Demand Avoidance are often far more elusive to diagnose correctly, and involve a long and costly assessment process carried out by a whole team of specialists.

Instead, it seems that the easy option is just to blame poor old mum.

Brain damage – and they are still blaming mum

I know one child who becomes so anxious when he doesn’t completely understand the world around him that he regularly threatens his own mum and dad and little brother with knives. He often talks about killing people, and when really stressed he has often told his mum that he’s looking forward to murdering her in her bed while she sleeps. He also self-harms, causing bruises, grazes and bites to his own flesh, which he then regularly tells staff at school that his parents inflicted deliberately. Even though his mum has videos of him causing these injuries to himself, and even through his school, the police and social services all know that this is a regular behaviour pattern, the school still has to follow the procedures for child abuse allegations each and every time.

Everyone involved knows this boy’s medical history. He was born at 30 weeks, and suffered a catastrophic brain injury soon after birth, which has left him with mild cerebral palsy, epilepsy and chunks of his brain missing. The areas where his brain was most severely damaged are the ones responsible for things like the ability to complete complex tasks, the ability to interact with other people, flexible thinking, focused attention, social behaviour, problem solving and personality.

Despite all this, 95% of the time this child is completely delightful. He has a tight-knit supportive family, he is doing well at school, and he has impeccable manners and a great sense of humour. His parents should be commended for what a great job they’ve done, and how well they have helped him overcome his inherent difficulties. It would be great to think that his parents have been supported every inch of the way by a team of people all wanting to do whatever they can to remove the very real pressures that this child’s behaviour places on his whole family.

Unfortunately nothing could be further from the truth. For years his parents have been desperately seeking help for their son’s very frightening behaviour. They have engaged with every type of Education, Health and Social Care professional you can think of. They have turned themselves inside out with trying to access help for their son, and training for themselves to enable them to keep themselves safe.

Instead social workers have told the mum that she has attachment issues with her son, she has been accused of poor parenting, she has been told to attend numerous parenting skills classes and tomorrow, she is being called to a Child Protection Meeting where she is accused of Emotional Abuse towards her son. She is one of the strongest, most capable and loving parents I know, yet she is nearly broken, not by her son, but by a system that instead of offering the help and support that a civilised society should extend to a mother in her situation, has judged her and blamed her for the inevitable behaviour caused by her son’s very real but invisible brain injury.

Child taken into care

Another family who I know spent 3 long years fighting for their child to be returned to them after social workers forcibly removed him to a children’s home. On the advice of the social work team, the Court deemed that their child was developmentally delayed due the parent’s “inability to parent”. He was finally returned to his parents 18 months ago, and the family has since learnt that some reports and professional opinion was deliberately withheld from the court that, had they been known at the time, would have clearly demonstrated both good parenting and that the developmental delay was caused by a disability rather than a parenting issue.

CAMHS

Many parents are eventually referred to CAMHS (Child and Adolescent Mental Health Service) for their child’s behaviours, and families can wait months and have to jump through all sorts of hoops to get their child an appointment there. These are the specialists in behaviours, yet many parents feel let down, marginalised and blamed by CAMHS staff too. Here’s what one mother of a child with Down’s Syndrome told me:

We were referred to Camhs when we sought help for our daughter’s  sleep issues or rather total lack of sleep. I had tried everything you could think of.  I’d spoken to the Down’s Syndrome Association, to a sleep charity, we’d been to see our GP,  and we’d paid a private Occupational Therapist who diagnosed our daughter as having a Sensory Processing Disorder. We even used antihistamine to try to break the cycle.

Eventually all our hopes were pinned on Camhs. I went for the first appointment hopeful that they would help.

I told them everything that we’d done. I showed them the sleep diary that we’d kept including all the changes that we had made. They appeared to listen. Then advice was given…pointing the finger of blame at us. That we didn’t have a firm routine etcetera. All rubbish. All contrary to what I’d said. We have the strongest routine out of anyone we know. All as advised by everyone we’ve spoken to for advice. They clearly hadn’t listened to a word we had said. I left the meeting in tears. When the written advice was sent weeks later, it was obvious that they hadn’t listened to us. It was standard information. Not acknowledging any of the action we had taken. I was treated as though as I was at fault. As though I didn’t care enough to have already tried everything.

Since then I have refused any further involvement with CAMHS. We still have major sleep issues helped by melatonin now but often we have appalling nights. Any professional that tries to assist always recommend CAMHS. I explain what happened and they understand and say that they’ve heard it all too often.

Their attitude towards me and us as a family has left me totally unwilling to work with them. It hurt like hell when I was at my most desperate, utterly sleep deprived and vulnerable.

Poor parenting not Autism

Children who are later diagnosed with an Autistic Spectrum Disorder often have parents who had blame and guilt heaped upon them when they first sought help. Here’s what another parent told me:

“Before my daughter was diagnosed with autism, I had to put up with some very difficult comments from her preschool teachers such as “playing with her for just 20 mins a day will make all the difference” I devoted all my time to trying to get her to interact with us, or course I was playing with her! For hours at a time! It was then suggested I go on “fussy eating workshops” which I did and which were no use whatsoever, they just made me want to stand in the middle of the room and yell at the other parents. They thought they had problems because their children didn’t eat more than 5 types of vegetable. I just wanted my child to eat, anything at all, I wouldn’t have cared, junk food, crisps, anything as long as she would eat! I was told I needed to anticipate her needs less so she would come to me for things. No she wouldn’t! She just wouldn’t eat or drink or have any interactions with us at all unless I basically forced myself on her. Same went for her speech delay, I needed to play more people games with her, I needed to prompt her, give her a chance to speak etc etc. Again, no I definitely did not, I needed professional help not criticising.

It is such a massive battle, and takes so long to get a diagnosis now that parents are really suffering and blaming themselves for things they think they are either doing or not doing. I am thankfully quite a strong character and refuse to take no for an answer. My daughter is also my second child so I could compare to my first and I knew things weren’t right. I really feel for those parents who for whatever reason can’t fight back. The whole situation is hard enough without you blaming yourself and feeling that everyone else, including the professionals, are blaming you too.”

Schools blaming parents

Another parent was blamed by her son’s school. This is her story , again in her own words.

“I have a son with Autism. Three years ago I had him assessed privately which included the specialist observing him in school. Not only was it clear he was autistic but the report described bullying and inappropriate teaching methods. I began discussions with the school about ways we could help him. Overnight I became a ‘bad parent’. A member of staff directly said this was my fault – I was not firm enough and needed to instill discipline. The headteacher sent a social worker to my house insisting that I needed to be assessed for my inability to manage my son’s unruly behaviour. I was asked to come to a meeting at school where I was confronted by a team of 5 staff and an Educational Psyhologist. The meeting began with them telling me I had to follow through at home what they were doing at school because I was not supporting my son appropriately. Anticipating this, I had brought in photos of visual timetables, reward charts, behaviour goals etc that I used at home. I showed photos of my son participating comfortably in a range of activities with my support, I showed charts where I had undertaken an ABC analaysis and devised targets and monitored progress. The Ed Psych was clearly impressed and at that point the meeting turned around. He came on side. In his report for my son’s statement he made a point of saying that the school must listen to me. It injured me quite deeply that the school failed to support me or show compassion to the family. They were confrontational, they blamed me for the problems with my son’s behaviour. They had no clue to support him. He was ‘naughty’ as far as they were concerned. I became the problem.. Parent blaming is insidious. It needs to be exposed”

Teenage Mum – it must be her fault

Another parent spent several years trying to get a diagnosis for her child. Her child was significantly late in meeting developmental milestones such as walking or talking, she was unable to grasp the concept of potty training until well into primary school, and she had huge aggressive outbursts and was very faddy with her food. The mum researched on Google and realised quite early on that Autism was a distinct possibility. She read up on everything she could find out about it and started to implement strategies at home to help. She alerted her child’s school, her GP and everyone else involved with her child. Instead of being able to access help,  she was undermined and blamed. Why? Because she was a very young mum, and stereotypical judgements were made about her ability to parent instead of her instinct that there was something different about her child. In fact, she is a wonderful mother, but nearly three precious years were wasted while staff tried to pin the blame on her rather than put in support and early intervention for her daughter.

The Lucky Ones

The family situations I’ve outlined so far are actually the lucky ones. They have managed to get their child diagnosed in the end, but it has been an uphill and very difficult struggle in far too many cases. In the process, mothers have been blamed, been guilt-tripped, been undermined and criticised.

Dozens of parents have also been in contact about their children who remain undiagnosed despite their very best efforts to get them the help they so clearly need. What happens to them?

What happens next?

I recently read some statistics from research about young offenders. It appears that 80% of them have an undiagnosed developmental condition of some sort or another. It’s so easy to shake our heads and wonder about the sorts of families that these young people must have come from. A huge proportion of them will have come from committed, caring, involved and engaged parents who were undermined, blamed and discredited at every step of the way in trying to get their children the help they desperately needed before it was too late. They all deserve better.

 

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Is it autism? Is it something else? Or is it all Mum’s fault?

14 thoughts on “Is it autism? Is it something else? Or is it all Mum’s fault?

  • November 23, 2015 at 12:55 pm
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    As you’ve put, sadly these stories are all too common. Those with NT children simply wouldn’t believe them. It’s not right that good, decent, honest parents are put through all this stress – not to mention the effect it must have on the children too. It feels like the world is not right when this happens 🙁

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    • November 25, 2015 at 11:17 am
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      HI Steph, thank you for reading this and for taking the time to leave a comment. I couldn’t agree with you more, and most people simply wouldn’t believe what can happen and how a parent can be unjustly blamed and vilified when they have done absolutely nothing wrong. The stress is enormous, and it can last for years and destroy a whole family. Hope things are good with you and the girls. Yvonne xx

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  • November 24, 2015 at 10:08 pm
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    Parents – we know our children the best and should be listened to

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    • November 25, 2015 at 11:07 am
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      Thank you for reading and commenting Soli, absolutely we know our children best, and of course we should be listened to, but far too often no one listens and our concerns and wishes for our children are sidelined. Parents are powerless when these sorts of accusations are made, and it can then become very difficult for our voices to be heard. Yvonne

      Reply
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  • November 29, 2015 at 2:46 pm
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    I have read this.lots is so true my child had lots of things going on. But we don’t have a diagnosis as apparently didn’t score enough points. However get told he has forms of this or that but not enough for a diagnosis. I just don’t get it all.

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    • November 29, 2015 at 3:42 pm
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      I’m so sorry to read about your situation. Lots of families are going through very similar things. If you feel there is “something” there, don’t give up. Keep notes about behaviours or other symptoms, document any incidents at school, or any communication misunderstandings or whatever, and every few months, with evidence that you have collated yourself, request that the diagnosis situation is revisited. Basically trust your instincts, when it comes to our children, our gut feelings very rarely let us down. Hope things get resolved soon, and very best wishes to your family in the meantime. Yvonne

      Reply
  • November 29, 2015 at 3:42 pm
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    I think I am lucky that as soon as I suspected my son’s behaviour was indicative of an ASD, I started to come across stories like the ones shared in your blog. My NHS appointment was months away and I had a ridiculously optimistic notion of securing help before he started school. Thankfully I was in a position to seek a private assessment and diagnosis, and get the school on board right from the start. It is too soon to say how CAMHS will help/hinder us though as we haven’t yet met, but I’m not terribly hopeful of receiving support. Luckily we are getting all the suppory we need right now from facebook groups and understanding friends and family.

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    • November 29, 2015 at 3:55 pm
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      It sounds like you have been on the ball very quickly, and to get the school on side from the outset will be giving your son the very best chances of getting the help he needs, and of successfully integrating into school in a way that he is accepted for who he is, rather than made to feel different because of what he might not be able to grasp. I’m also pleased to read that you have already found some support on Facebook. Are you on my page? I share the very best of whatever I can find about autism and any disablity, several times a week, and a lot of parents with ASD children find it very helpful. Here’s the link – https://www.facebook.com/thespecialparentshandbook/ . It does sound as if you are doing a fabulous job, and that your little boy is very lucky to have you on his side. Hope things continue to go well. Yvonne

      Reply
  • November 29, 2016 at 7:32 pm
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    My little boy has been diagnosed asd with pda.I am a single mum and I grew up in the care system.I have a 12 year old daughter too and she is an amazing child.Nobody has had any concerns for my parenting and actually my story is the opposite.we have had 2 years of successful engagement with child in need social care and cahms.ive fought long and hard with the system.My little boy is only 7 and has been struggling so badly in school which has been having a massive knock on affect at home.Ive been called a fantastic brilliant commendable mother by social services cahms and school.Then the children with disabilities team took over and I naively thought my son would get the correct support.how wrong so badly wrong.We are in care proceedings my daughter living with a friend because she is at risk from my son and a court directed phychologist without assessing him saying he must have and attachment problem instead as she hasn’t recognised his pda diagnosis.Social services are trying to take my son and have ignored 7 years of positive parenting reports from lots of different agencies 🙁 don’t know how to stop them.

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    • January 16, 2017 at 1:51 pm
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      Oh Tammi, first of all, please accept my apology that it’s taken me so long to reply to your comments, I don’t quite know how but I’ve only just seen what you wrote today. I am so sorry that you’re going through such a difficult time, I really hope thing have improved since you wrote this, but it’s so hard how assumptions get made and decisions are taken outside of a parent’s control. What is happening to you is sadly not an isolated incident – there are cases similar to yours that I’ve heard from all over the country and in other countries too. Are you getting any support? There are organisations such as SENDIASS, IPSEA and SOSSEN who might be able to help, certainly as far as the educational issues are concerned, and The National Autistic Society or Contact a Family may be able to offer advice and support too. If you’re on Facebook, please like our The Special Parent’s Handbook Facebook Page if you’re not already on there. I share a lot of posts on this a closely related issues, and we can all learn a lot from other parent’s experiences. Take care, stay strong, and I’m sending all my hope and best wishes that you get through this and find a way to keep your family together. Yvonne xx

      Reply
  • April 17, 2017 at 1:54 pm
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    You know our story well, I’d say a melting pot of the above! We’re still fighting for the right support, we the parent/s are the only ones to see it through to the end and have the child’s best interests at heart, a lonely place but in trying and keeping on we alone know that we have done the best for our children even against all the resistance.

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  • April 17, 2017 at 2:14 pm
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    Thanks for this I been struggling to get my son help for few years now I have mental health problems myself and always get the line it’s me not him 😐

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  • May 18, 2017 at 9:57 pm
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    When you posted this, we were going through accusations of me making it all up as my daughter is a master masker. I was blamed and vilified. I’m suffering PTSD still as a result two years on. It’s damaged all my relationships with professionals. It’s a long and complicated story but it’s a trauma I’ll never forget. I’m still isolated without support as a result and ultimately it’s my children who pay the price as they don’t have the best version of me because I’m so depleted from having to defend myself to the system, instead of having that energy available for my girls.
    I genuinely believe I’d be an even better parent with support.

    Reply

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