Today I read about the recent report by GL Assessment which highlights a belief that pushy parents are getting unnecessary SEN diagnosis for issues that teachers believe can be resolved in the classroom, whilst those with genuine need are missing out.
I am one of the parents who turned to private assessments in desperation when it felt like we had no other choice. Am I to blame for other children not getting the help that they need?
Our storyMy Son is high-functioning and has atypical autism, and we had no idea that he had autism until he started school (an independent school). Shortly after starting school, we were called in to discuss his behaviour. We knew there was more to it than being naughty so we decided to find answers and help.
With a 5 month wait to see a paediatrician (if you were a priority case), we knew we didn't have that much time. So we turned to private assessments. This was not because we chose to, it was because we felt like we had no other choice.
Our first private assessment helped us to understand that our Son may have autism, and allowed us to identify strategies that the school could use to help him in school however we were repeatedly told that they didn't have the capacity or resources to implement many of these strategies. We battled with the perception at school that our Son was manipulating the situation around him, knew what he was doing and chose him moments to act out. There were suggestions of lack of sleep and lack of discipline, and he was blamed for his teacher being booked off on stress leave. More incredibly the SENCO stated that she didn't get involved with autism as it was too complicated for her, and she believed it was best for parents to get an EHCP.
With little support, we had to figure out what an EHCP was and how to get it ourselves. Once again we self-referred to professionals as we didn't know what to consider or what was important. Time was critical, as we were at risk of exclusion by the school at this point.
Our request for an EHC Needs Assessment was turned down for "lack of sustained involvement from outside agencies". We were stuck, we needed an EHCP for support but the EHC Needs Assessment was turned down because we hadn't had support. What were we to do? Further private assessments helped us gather the evidence needed, and it took us another two months to get a yes to an EHC Needs Assessment based on the strength of the various reports we had.
We were lucky to receive an EHCP later in the year, however it took two school moves (mainstream and now special school) in less than two years for my son to find the support he needs. I don't know if I was viewed as a pushy parent, but I doubt this would have happened if I hadn't gone down the private assessment route.
It was not an easy option, and we are still slowly recovering from the battle a year and a bit later. I can't imagine any parent choosing to go through this just so they could have a label, or a get little extra help in exams.
What has been saidSo you can image how I felt when I read that what had been reported, and the media coverage did little to lift my mood.
The report findings that left me concerned:
- [asked] why children continued to be misdiagnosed, just over half (54 per cent) said parental pressure was to blame
- [teachers felt] some [parents] wanted a medical or psychological explanation rather than having to accept that their child had a classroom problem that could be addressed by a teacher
- a large minority (39 per cent) thought it was because some parents wanted a label to help their child gain a competitive advantage in exams
- It cannot be right that so many children are misdiagnosed with learning difficulties; all the more so if family pressure is the cause
- How unforgivable then, if children with genuine need miss out because help is diverted to those who don’t really need it
- Educators are warning that middle-class parents who know how to work the system are getting diagnoses for their children
- Parents may think people will be a lot less judgmental of a child’s behaviour – and their parenting skills – if they know the child has a label
- Even if there’s maybe not something actually wrong with them, a diagnosis fits them into a box which means they can get that extra help
Why I am upset by thisFirst is the lack of balanced reporting which made no attempt to consider why this may be happening, or give insight into the wider context of the the many challenges that parents and teachers face in trying to get support for children with SEN support needs. Where is the parents' response?
Second is the insinuation that some parents are working the system to gain an advantage for their child or find a "comforting" label to explain their child's behaviour rather than their own parenting. Has there not been enough parent blame? How many is some? One, one hundred, one thousand? By not quantifying "some", this has been made as a broad sweeping statement that makes it seem common place when the reality could be much less frequent.
Third is the implicit accusation of professional misconduct, where children who don't need it are being diagnosed and that parents can buy this diagnosis. What is the basis for believing children have been misdiagnosed? Why are teachers questioning the professionals' diagnosis? If there is really a question of this happening, why is no one holding these professionals to account?
Fourth is the statement that children are missing out because other parents have fought for their children to get help. How can one parent be blamed for another child not getting a diagnosis and support? What is being done to help undiagnosed children with real need to get their diagnosis when the parents aren't able to advocate as much as other parents or pay for independent reports? Is it wrong for parents to do all that they can to help their child? If there are insufficient resources to support all children with needs, what is being done to highlight the lack of resources?
I have met many parents in stressful situations after their concerns for their children been dismissed by teachers, or they have been waiting years to get a diagnosis and adequate support. Sometimes when you are battling the world, you have no choice but to become a pushy parent. If you don't push then you will lose out.
This report feels like we are moving in the opposite direction from where we should be heading. We should not be blaming each other or creating divisions, we need an environment where educational settings, health care professionals and parents work together to understand the needs of a child and how best to support that child.
I you have a little time, it would be great to get your input!
we need an environment where educational settings, health care professionals and parents work together to understand the needs of a child and how best to support that child
Other peoples viewsI hope that if enough of us speak out that we might be able to get someone to follow up on the parents side to this story. To do my part in raising awareness I have started a twitter survey to get parents views, and hope to report back next week on the results along with some of the stories and views that have been shared with me.
I you have a little time, it would be great to get your input!
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Are you are parent who went for private diagnosis for a child who struggled at school. If so why? #SEND— Life, ASD & the rest (@LifeASDRest) 25 February 2017