No diagnosis

When you do not get a diagnosis

“I expected them to be able to tell me what was wrong, and they didn’t, they couldn’t, as it were, so that was a bit of a shock. It shakes your faith a bit, doesn’t it?”

Some of us will never get a concrete explanation of our child’s SEN. Some will get vague diagnostic labels like ‘global development delay’, which can suddenly transform into a ‘developmental disorder’. Some will find that they’ll start off being told their child has one thing, only to be told they have another in later years. 

“I was totally devastated when he got a diagnosis of autism aged 7, after years of being told he had ‘speech and language delay’. I really believed he would just grow  out of it – I think I used the lack of diagnosis as an excuse not to face up to the severity of his difficulties. I wish now I had accessed more help at an earlier stage.”

Be aware that as you try to drive things forward towards assessment or possible diagnosis, you may be met with “age boundaries”.  Your child may present with symptoms that point towards a certain condition but you may be told that formal assessment isn’t possible until they reach 7 or 9 or 14. This can be extremely frustrating if you believe early intervention and support could benefit your child. Trust your instincts and prepare to make your case clearly and calmly and regularly; health professionals may be able to offer a more flexible approach but keeping up the momentum may fall to you.

Furthermore, without a concrete diagnosis, professionals can find it very difficult to give you answers to those difficult questions about the future: ‘Where will my child be in ten years’ time?’, or ‘Will he grow out of it?’ It’s not just the dealings with professionals that can be problematic. Without a label, family and friends can find it more difficult to accept there is a problem and to give you the support you need. If the diagnosis changes, they need to assimilate this too.

These states of ‘not knowing’ or ‘all change’ can be a huge emotional struggle for families, as can the strain of pushing and pushing for a proper explanation. For many parents it’s a battle worth fighting. Though a diagnosis is not the be-all and end-all, trust your instincts; if you sense something’s wrong with your child, keep pursuing things to get answers or, more importantly, get the right support for your child. On the other hand, some of us may just need to learn to think of our children as a bit quirky or eccentric or fragile and stop searching for the perfect explanation.

“My younger son does not have a concrete diagnosis so it was essential for us to get him assessed and gather evidence in all the areas he has difficulties in to enable us to successfully apply for DLA and work in partnership with the school to get him SEN funding for support.  It was very daunting but we took it slowly and asked for help along the way.  It mainly came from other parent carers who had been in our position and knew their way around the system.”

Here are some key things to remember when struggling or coping with not having a diagnosis.

  • Focus on what’s really important – namely working out what help your child needs, not what label they have.
  • Find an explanation that works for you. You might not be able to tell friends ‘my child has such and such condition’ but perhaps you can say something like ‘his instincts are not like other children’s’ or ‘she has difficulties with understanding social situations’.
  • Just because you don’t have a diagnosis, it doesn’t mean you’re not right to be concerned and to ask for help for them.
  • Access all the help you can as early as possible – even if your child does grow out of their difficulties this will help them in the meantime, and if they don’t, you won’t later regret not having acted early enough.
  • You don’t need a diagnosis to get all sorts of extra help for your child, for example extra support at school or Disability Living Allowance (DLA) – so ask for it.
  • Sometimes you will need evidence about your child’s needs or difficulties but that’s not the same as a diagnosis. For example, for claiming DLA you will need some confirmation from other people that your child needs extra help     but this doesn’t mean a specific diagnosis is necessary.
  • Watch for change, monitor your child’s progress. They might not have met the clinical criteria for a particular diagnosis at three, but if they’re still demonstrating certain behaviours at seven, they may now be diagnosed.
  • Become involved in Somerset Parent Carer Forum Participation opportunities in your local area by contacting the forum.
  • Contact the Somerset Parent Partnership Service  (see details below)