Nobody’s Problem

Nobody’s Problem

These are the children that have a diagnosis of an autism spectrum condition, often following an assessment initiated by parents asking for help.  They lurch from one day to the next, barely coping, just about surviving – but not living,  not really.  This is not a childhood you would wish on anyone.  Their parent’s request for help led to a diagnosis (eventually) – but not to any help.  These are the children in no-man’s land.  Not coping with the (very ordinary) demands placed on them, but not sick enough to warrant support yet.  If they do become very mentally ill, then whether they receive treatment or not seems to be based on pot luck.

But it is not the acutely or seriously ill (yet) children that are the topic of this blog.  It is the children that are living in no-mans land.

  • Children who are distressed every day because they spend hours in a school setting without support, understanding or a single adult that can rescue them if their anxiety spirals
  • Children who, for various reasons, are “anxious because their autism and sensory needs are neither understood nor met in school”
  • Children who are too scared to let their secret out – they have very little understanding about the social world; they spend all day stressed and confused and work constantly to hide it
  • Children who cause themselves pain to prevent their anxiety from overwhelming them
  • Children who cannot control their panic and turn tables over, run away and throw computers
  • Children who try to express in their own way that their life is one not worth having

School want the problem fixed, but they think the child’s parents and CAMHS should do the fixing.  They feel they have tried everything and that there will be no more support to help them to support the child.  The GP feels helpless to assess the problem in 10 minutes, let alone to help (though speaking personally, 10 minutes of some one believing you is pure gold).  The parents are frantically working to understand their child and to communicate what they have learnt about their child’s condition(s) to school, who become increasing frustrated by the situation.

CAMHS can’t fix this alone.  They can’t.

CAMHS could offer a highly trained Clinical Psychologist with expertise in autism and all the interventions available to help the child manage their anxiety, but unless their school environment is better adapted to suit them, then it will not fix the problem.  The child and his or her parents would appreciate the support.  It would make a difference (just like the GP that listens or the teacher that tries their bests to help) but it won’t fix the problem.

CAMHS can help by conducting thorough skilled assessments.

CAMHS can help by then effectively and clearly describing the problems that the child is experiencing so that they can be understood.  This is not telling school what to do, it is describing the problem, the effect it is having and the consequences of not making a change.

School can help by properly implementing the SEN Code of Practice.  By properly considering the child’s barriers to learning, to implementing the graduated approach, and by ceasing to talk about targets and start talking about support.  Get it right and the child will progress.  

Until these things happen I believe our children will be stuck in no-mans land until they break.  If they break.  Then they will be stuck in hell for a while.  Maybe then there will be a chance to thrive, but only maybe, because even then they may not get the support and treatment that they need.

I think we need

  • A culture that stops assigning blame.  Blaming the parents, the teachers, the children, CAMHS….
  • Health care professionals that will conduct credible assessments and write reports that clearly describe the difficulties
  • To implement chapter 6 of the SEN COP.  These children all have multiple barriers to learning that need identifying and support allocated: much of this is FREE and comes with a change in thinking and in culture.
  • Genuine, mutually respectful, multi-agency working in collaboration with parents.

I believe that this can be done, but that someone needs to to start making the changes necessary to do it.  In the meantime, lets all do one little thing to make no-mans land a little better for these children; today and every day.

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20 thoughts on “Nobody’s Problem

  1. Yes, yes and yes. My son goes to a school who try their best to support him but the anxiety still is there for him. Always, subtle and ready to explode at any time. The SENCO ‘gets’ him, his teacher describes working with him as ‘treading on egg shells’. CAMHS don’t want to know (not severe enough), our GP does his best but our sons needs can’t be met, referrals can’t assess for what he needs (OT don’t assess for sensory issues). This is my sons future at stake and I feel so angry for him and all those other SEN kids out there.

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    1. Really, OT don’t assess for sensory issues? They did in my area! I think your OT isn’t doing their job properly and needs talking to… 😦 I am so sorry for you and all other parents who aren’t getting the support their kids need and deserve. It is everybody’s problem and it just isn’t good enough, is it!

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  2. Absolutely. Couldn’t have put this better. As a specialist member of a team who diagnose children with Autism (but are not commissioned to provide a follow up service – grrrrr- we’d love to) I spend many hours listening to parents telling me awful things about lack of support and understanding in schools. It s heartrending xx

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    1. Oh thank you so much for this! I really hope the post i will do soon about SEN support in schools will help clinical staff to signpost parents at least. I would appreciate any feedback from your perspective on the “we won’t treat your child’s mental health problems” and “when school staff refuse to accept a diagnosis” if you have the inclination! 🙂

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  3. So so true! We have an amazing Sen teacher (and we truly are blessed to have her), patchy OT and nothing from CAMHs (we are on a long waiting list that I know will only lead to diagnosis not treatment). I also know it would be truly life changing if all 3 could really work together.

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  4. Where are the free resources to help? I would do anything I can to help my 10yo son who is waiting for a diagnosis from CAMHS. I was hoping to be signposted to helpful places but feel completely put of my depth and after reading this I’m worried we may not get the support we need even after any diagnosis. I have flagged up the issue at school and think we may have support within their resource constraints, and GP is supportive so that’should a big part of the battle, but I’d like to be prepared for what is coming…

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    1. hello 🙂 I found the best I could do was to read loads of books by credible authors and pick the bits that relate to my son. The other thing I have done is join a really good SEN forum (Educational Equality). Sounds like school are helpful which is good?

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    1. i’m so sorry. looking at the keyboard for inspiration and I don’t know what else to say. xx I am going to write about ‘SEN Support in Schools’ (chapter 6 of the SEN Code of Practice) in the next few days and I really hope that there will be information in there that can help a few more people. Day at a time x

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  5. My daughter’s school have been amazing. Her teacher is doing so much to support her and the SENCo is supporting us, giving us strategies to use at home and even just emotional support. But the problem is a lack of funding in services. The process is so slow and arduous and the main reason for that seems to be the financial implications of a diagnosis. It’s so frustrating. We have to prove that she needs additional support because her condition is an invisible one. If she had a physical disability, regardless of how well she was coping in the school environment, she would automatically have access to support. It seems very unfair to me.

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  6. Turning things on their head can help us to see and contemplate matters in a different way. There is much new thought around balancing the gut brain system that could be a game changer in terms of healing Autism. Maintaining a healthy balance within the trillions upon trillions upon trillions of different friendly gut bacteria is key to mental and physical health and can be achieved with eating the right food and cleansing the body of metals and toxins. We need a new paradigm with which to view the relationship of the gut/brain and overall well being of any human being

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  7. My D is 16. Dx ASD at 6. Now has severe depression and anxiety ( plus Eating Disorder and BDD) contributed to by the systemic failure to support her.

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  8. CAMHS do need blaming though. They are clueless about autism, often in how to recognise and diagnose it and then in how to support it. I agree they can’t make the school experience successful for such a child, but then I don’t believe in inclusion for most autistic children either. Until the right sorts of schools are provided for autistic children, until the government stops equating offering inclusion for those it suits, with forcing all children with SENs into mainstream as an experiment until they are proven not to cope, families will have these awful difficulties.

    The parent blame culture is the worst. It is so incredibly damaging and sometimes leads to families being torn apart purely because professionals don’t believe parents and sometimes act in malice because of parents fighting for their child’s valid needs.

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  9. This is why we home school. I love being with my child and I cannot imagine leaving her with a group of strangers who MAY support her, but are equally likely to lock her in a cupboard for being ( simply her own wonderful self ) ‘naughty’ :(.

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