Published Monday, March 06, 2017 by

Hooked on labels - a parent survey response

SEND misdiagnosis, labels, pushy parents, assessments


Frustrated by a lack of balanced reporting in relation to the recent Hooked on Labels report by GL Assessments based on a survey of teachers, I decided to run my own poll and capture parents views.

A quick recap for those who missed this.  The survey by GL assessments,  which was covered in the  media (TES, the Guardian and the Independent), reported that teachers believe pushy parents are leading to unneeded (and incorrect) SEND diagnosis for some children. Opinions cited as reasons cited for this included gaining a competitive advantage, refusal to accept that a problem could be solved in the classroom, working the system, and wanting a label to avoid judgement of parenting skills.

There were many reasons that I was upset by this. This included a lack of the parents voice, no consideration of the wider context and no mention of the many challenges faced by SEN parents trying to access support for their child's needs. I hope that my polls can help shine a light on one of the other sides to this story and address some of the points raised in the report.

The polls

The snap polls captured the views of 100+ people over the course of a week. Voters also shared insights into their views by commenting on the twitter polls and in discussions on Facebook (need for labels & private assessments).

I asked two questions:


Almost all (92%) believed that a "label" i.e. diagnosis is needed to get support, and the primary reason cited for getting a private assessment was a lack of school support. Interestingly, when it came to reasons for seeking private assessments, long waiting times for diagnosis received less votes than a lack of school support and not being listened to.

I can't comment on why parents voted the way they did or guarantee that the views are representative of all SEN parents. What I can do is summarise what they said, and let you decide for yourself. 

So, why do parents want a 'label'?

Are parents too focused on getting a label? Are they looking to place them in a box to get extra help? Are they trying to avoid judgement for their child's behaviour, or even their own parenting skills?

Firstly not all parents wanted a label or viewed having a label as a positive thing, and as one Dad pointed out there are many children who don't want a label as they don't want to be seen as having special needs.  

It's not a label, it's a key (opening doors to resources, support and understanding) 

For some parents a diagnosis was not seen as label, but as something to help identify needs. For others, the words label and diagnosis where thought of interchangeably. So a diagnosis can be viewed as both a label and a way of identifying a child's needs.

Self-understanding

One reason parents wanted a diagnosis was so that they could understand why their child was struggling, and to identify the strategies to support them. Some parents also felt that a diagnosis helped them to accept their child's needs, plan for their future and identify the path to follow in order to ensure that their child was supported in their current and future life.

without a label you can't learn about the specifics of a condition, it's harder to make adjustments as a parent

The value of an early diagnosis was highlighted by a woman whose mother had suspected that she had autism as a teenager but was dismissed. Her parents had no support as she grew up, and she felt let down by school. Growing up, she knew that she was different but didn't understand why. Now in her thirties, she is going through the ASD assessment and is learning to be accepting of herself.

To gain acknowledgement

Being believed was a challenge that many parents highlighted, where they were not able to get the backing of teachers and healthcare professionals to assess their child for potential SEN needs or provide them with additional support. In some instances, this was despite having a confirmed diagnosis (NHS and private).

daughters diagnosis with NHS at 3, still two teachers have told me 'its not autism'

A lack of understanding was also noted by some parents. Parents believed this was either due to a lack of SEN training / experience and misconceptions about what is/ isn't characteristic of a particular condition.

Too many times I hear parents and see them crying through the frustrations caused by the inability and lack of understanding by schools

In other instances parent had been accused of looking for problems that weren't there, or were blamed for their children's problems. In particular parents had been told that their own anxiety was to blame for their child's behaviour rather than an underlying SEN need. With parents talking of discrimination due to being on the spectrum themselves, accusations of neglect and enforcement of child protection orders, it seems like many are having to face parental blame.
have been told for 3 years that my 'parenting skills' and 'anxiety' are to blame

The importance of teacher backing in accessing support was highlighted by a mum who struggled for years to have her son's needs acknowledged by his school. That changed when he started year 2 and his teacher said that she thought there was a problem. After that things changed for the family, and they were able to have the discussions necessary to put the right support in place.

Why not just rely on school to meet needs?

Are parents looking for a medical or psychological explanation for something that can be addressed in the classroom? Are children able to receive an accurate assessment, personalised teaching and targeted support without an external intervention?

In addition to challenges of school not believing / accepting that a child has SEN needs, most parents stated that they were not able to get any support without a diagnosis and only a handful of parents reported receiving support from the school without a diagnosis. 

I don't care about money .... without a diagnosis or statement you get zero help
Even where schools were supportive and wanted to help, there were other factors noted which limited a schools capacity to provide the necessary level of support.

Need for outside services

Sometimes school support was not enough. Parents indicated a need for support from other services, including Occupational Therapy and Speech and Language Therapy. To access these services, parents needed a diagnosis. 

Availability of Resources

Limited availability of funds and support services were noted by parents.

Lack of funding or allocation of limited funding only to extreme cases, was a key challenge noted by parents. In some cases parents had a supportive school however there were insufficient resources to provide the level of support required.

This issue was highlighted by a SENCO  who struggled to get a child assessed by an Educational Psychologist, as they had no capacity to carry out assessments. In the end she sought a private assessment, and then had to justify why she had done so.

Limited access to resources was highlighted in other areas as well, including access to Occupational Therapy (OT) and Speech and Language Therapy (SALT).

Required evidence of needs

The needing to evidence a child's needs to access support was another reasons highlighted for parents wanting a diagnosis. In one case a parent was advised by the school that they wouldn't be able to apply for an EHCP (a falsehood) or access support until they had a diagnosis and associated paperwork to evidence their child's needs.

they reckon they support needs not labels and then demand evidence

Evidencing needs was also noted as being essential if parents wanted to legally challenge the SEN provisioning for their child.

Why be pushy?

Is parental anxiety getting in the way of an objective evaluation? Are parents pushing to have their children assessed to be able to get support quicker? Are parents demanding too much time with teachers?

Many parents admitted to being a pushy parent after having faced multiple battles, often for many years, to access support.

Immediate need for support

Time was a critical factor for a number of parents, where their child was struggling at school and the need for support was urgent. They spoke of having to push to do what they could in order to help their child. For many this involved private assessments, whilst for one mum it meant needing to change schools multiple times in order to achieve the best outcomes for her son.

 No one was coping & no one was going to help fast enough

For many a private assessment was able to help, however they didn't alway seem to hold the answer. In some cases parents indicated that the quality of their assessments were questionable, whilst others had been informed that their private assessments would not be accepted by their Local Authority and couldn't be relied on to provide evidence of their child's needs.

Long wait for diagnosis

Struggling for a diagnosis, with a wait of anywhere up to 5 years was another challenge for parents. In one case a parent waited 4 years for a diagnosis, which was hampered by the fact that the first set of paperwork was lost.

we went private as this was the only way. 4 months tests and ASD moderate/severe. NHS took 5 years and zero tests. 


Ongoing challenges to obtain support

Ongoing battles for support, even with a diagnosis, was a common source of frustration for parents. This included challenges with EHCPs, authorities, LA funding, and a lack of a cultural change in schools following the change in legislation.

as a family were left feeling battered and bruised by the system

Not everyone spoke of challenges in getting support. A number of people spoke highly of the support that they had received from school, and for one mum it was the school who suggested going for an assessment as they suspected autism.

What have I learnt

Yes there does seem to be a focus on diagnosis (labels) rather than needs, and parents are pushing for a diagnosis to get more support for their children.

It would appear that in many cases parents are being pushed to provide a label to evidence needs, and they they often struggle against numerous challenges to ensure their child is provided with the required level of support. Something which can take years to achieve.

With limited resources, long waits for a diagnosis, the need to provide evidence, and a battle to have their child's needs acknowledged/ accepted it would appear that parents often have little other choice but to be pushy.


Please leave your comments below if you have any views in relation to the GL Assessment survey, pushy parents and SEND misdiagnosis, or a focus on needs vs. labels


Note. I am am not a qualified researcher, SEN expert, or someone who understands all the battles that parents and teachers face in meeting childrens' SEN needs. I am just a mum trying to make sense of it all.  Unless specifically noted, views stated are not necessarily my own and are a representation of the responses shared by others in response to my polls. 


You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers.