14/08/2014 16:50 BST | Updated 22/05/2015 10:12 BST

Children With Special Needs: Getting A Diagnosis

Children with special needs: Getting a diagnosis

Being told your child has special needs is usually a terrible shock, even if you were expecting a diagnosis or have been locked in a lengthy and stressful battle to have your child's problems and needs recognised.

Often the focus on actually getting the diagnosis – particularly if the process has not been straightforward – has been so all-consuming that you haven't actually thought about how you will feel or what happens next.


Hearing official confirmation of your suspicions can lead to a roller-coaster of emotions. It is perfectly normal to feel disbelief, grief, fear, anger or guilt (and possibly all of these) as well as relief and determination to help your child.


"Whenever it is dropped – before birth, soon after or later - it is a bombshell. Most people that come to us are in shock, sometimes angry or upset, often very bewildered," says Rosie Noble of Contact A Family. "They just don't know where to go next, because being a parent of a child with special needs really doesn't come with a handbook."Depending on the diagnosis, and the severity of your child's condition, you may be besieged with worries about the future. Things you had previously taken for granted, or never had cause to consider, such as a child's access to education, ability to form friendships and romantic relationships, the possibility of them living independently, having children of their own, holding down a job and so on may suddenly seem to have been snatched away. Suddenly it may feel as if you and your child inhabit a different world to everyone else.

Take it one day at a time

Of course all this is far too much to deal with at once. It is important to take the time to deal with the shock of diagnosis before projecting too far into the future.

"You must grow with your child and go a day at a time," advises Rosie Noble. "Live the life your child has now. They are not going to be adults tomorrow. None of us knows what our child will be like at 18 so enjoy what she has now."

If your child's life is going to be very different from the one you might have expected, then trying to adjust your expectations, without writing off any progress, may be helpful.


Move the goalposts a bit. Perhaps it isn't the picture you thought it was going to be, but you can still do as much as you can to meet your child's full potential and help her develop as much as she can every day. Most families can have great fun with their children.


It may transpire that your fears are exaggerated anyway – or that other, less predictable, milestones will be a source of equal pride and joy.

Whatever the future holds time will almost certainly make the situation feel a little more manageable. Feeling emotionally more stable and working out practical ways to make life easier can change the outlook. In many cases parents have a diagnosis, but very little actual information. Finding out more about your child's condition and available support is a good start.

"Many parents feel it very much like bereavement at the start," says Rosie Noble. "Later on we usually see them in a different place - more used to the idea and reacquainted with their child. For some families, in some situations, it is always very hard, but most reach a point of resolution."

In many cases, says Rosie, having a child with special needs puts everything else into perspective. "You realise what your own values are. Some things will just not seem important any more. What matters is that your children are as happy and well balanced and making as much progress as they can."

Focussing on your child's strengths and celebrating their achievements are really important. It can be hard at the start when the emphasis is necessarily on the negative – after all seeking a diagnosis is usually about pointing out what your child can't do – but it should become easier.

"Children with all sorts of disabilities can do so much, enjoy life and be valuable members of society," says Dr Robert Scott- Jupp, a Consultant Paediatrician at Salisbury District Hospital."There will be something they can do well so enjoy that."

What parents say

Helen, mother of Freddie,10, says:
"The thing which has stayed with me the most from the diagnosis was the consultant saying Freddie was still the same child he had been before diagnosis. It didn't feel that way right then, but it is so true. Soon you see your child again and not just a label. "

Tom , father of Emily, five, says:
"When the word autism was first mentioned it felt like being kicked in the stomach. We had never considered it, but as soon as we read up about it we knew. The checklists of symptoms just seemed to be written about Emily. Hearing officially felt like the end of a chapter – no more 'maybe, maybe not' debates. We felt a bit numb at first, then very emotional.

"For a while you are grieving the child you thought you had. "

Nikki, mother of Christian, six, says:
"When Christian was diagnosed he had no speech and we doubted he ever would. Now he calls me mummy and communicates so much more without words. I'm thrilled at the progress he's made."

Telling people

Parents of children with special needs often feel torn and confused about telling others - whether close family and friends or the wider world.

On the one hand you might feel like wrapping your little family unit up in a protective bubble and keeping the news to yourself until you have had chance to digest it. You may instinctively feel too raw to deal with other people's reactions.

On the other hand not telling people may feel like somehow denying your child or implying you feel ashamed of their diagnosis in some way. A new diagnosis is also likely to be at the forefront of your thoughts and it may be difficult to think or talk about much else for a while. If your child has an invisible disability – such as autism - you may feel telling others will stop them judging his or her behaviour and your parenting.

There are some people you may feel you have to tell immediately – grandparents and close family friends who may have supported you through the path to diagnosis for instance.

Sometimes parents will not receive the reactions they expect, and this can add to the stress and isolation they may be feeling. Grandparents and others close to the child may question the specific diagnosis or very idea of there being anything different about your child, seek reassurance you do not feel qualified to give, or become very emotional. Dealing with difficult reactions can feel like another burden at a difficult time.

"There is no right or wrong way with telling people," says Rosie Noble. "If parents want to hide away for a bit that's fine, so long as they are not isolated for too long. We just try to reassure people that they will find the reactions easier in time when they develop the thicker skin which parents nearly always do."

What parents say

Carrie, mother of Emily, five, says:
"When my mother-in- law found out Emily had been diagnosed with autism she ended up crying down the phone for ages. I was struggling to cope myself but I felt I had to support her through it instead. It was only because she cared so much, but I felt angry with her. I just wanted to focus on my daughter and her future. We just had to get on with it."

Jane, mother of Jake, seven, says:
"I had a huge row with my step-father when my son was diagnosed with ADHD after years of inconclusive worries. He questioned our motives in getting Jake assessed and said we were 'condemning' him."

Helen, mother of Freddie, 10, says:
"I felt we had been plunged into a parallel special needs universe and that our lives were suddenly completely different to everyone else's. At first I felt very isolated, even from my closest friends. It felt as if they couldn't possibly understand. Now we don't feel so different. We have sought out other people in the same boat as well as our old friends."