It can be extremely stressful coming to terms with what's happened to your child. For many parents, the most stressful time of all is when your child is first diagnosed, or is going through the process of trying to get a diagnosis. This process in itself can be very upsetting. What you may not realise is that many, many children with special needs never get a specific diagnosis. Their needs may be so complex, or their symptoms don't fit a pattern, or there may simply be no identifiable reason for the child's condition.

• The pros and cons of diagnosis
• Your feelings about diagnosis
• Strategies for coping with diagnosis
• Second opinions
• When you don't get a diagnosis
• Strategies for coping when you don't get a diagnosis
• Children who are fostered or adopted

The pros and cons of diagnosis

There are pros and cons to having a diagnosis for your child. You might find, for instance, that having a specific diagnosis means your child is not eligible for certain schools, or for benefits that you thought were appropriate.

On the other hand, some parents find that having a specific diagnosis is very helpful because you can start to read up on the condition, join relevant local or national organisations, find out about latest research, and perhaps most importantly, meet other parents in the same boat as you. It can also be a great asset when you're applying for various benefits to be able to say my child has this syndrome or that disability.

“Sometimes if you get a diagnosis, your child is automatically labelled. There's no expectation of ability.”

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Your feelings about diagnosis

All parents feel and react differently to the knowledge that that there's something wrong with their child. Some might try to kid themselves for a long time that there is nothing wrong, others do the opposite and try really hard to convince their doctor or health visitor that there's a problem. Many parents feel completely devastated to start with, then somehow angry – 'why us? Did we do something wrong? Could we have done anything to prevent it? Why wasn't it picked up during my pregnancy?' And, certainly, all parents can feel bereft - 'This isn't the child I expected'.

Parents often feel crushingly guilty at some of the thoughts that go through their heads: 'I don't want this child, I won't be able to cope, I don't want to have to cope'. But you can be sure that whatever you're feeling at this moment - anger, despair, fear or overwhelming protectiveness - somebody has been there before.

“To me, it was like someone had died, and it takes a long time to come to terms and to be rational about it afterwards.”

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Strategies for coping with diagnosis

It takes some parents a few months, many more a few years, to feel that they are beginning to deal with this different life. However, some simple steps can help you to make better sense of what you are finding out about your child:

• If you are expecting news, take someone with you for support.
• Don't worry unnecessarily, make a list of questions you want to ask and take this with you. Ask about anything that is worrying you.
• Ask if you don't understand what has been said and don't be rushed, take time to think.
• Ask what will happen next, who you can speak to regularly for advice and where you can get more information.
• Professionals cannot always tell you how things will turn out.
• Remember, you have the right to be given information in a respectful and sensitive way, delivered by specially trained staff.
• Sharing news with other significant people in your life can be really tough, so ask for help.
• Talk about how you are feeling with the rest of the family but avoid blaming each other.

AMAZE produces a factsheet, 'News breaking and survival strategies', to help you in these difficult times, so download it here or call us for a copy.

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Second opinions

Sometimes parents want medical diagnoses confirmed. Usually this is not because they don't trust the doctor, but simply that they need to feel absolutely sure that they have explored every possible avenue on their child's behalf. Some doctors are very sympathetic towards these feelings. Your child's GP or consultant may be willing to refer you to a different consultant for another opinion, but they don't have to do this if they don't agree that it's necessary.

Parents who can afford to might choose to approach consultants on a private basis. Private health care is very expensive and it is not at all easy to discover for yourself who is an expert in any particular condition. You may be able to get advice about these matters from The Patients' Association, the Care Quality Commission or the Patient Advice and Liaison Service (PALS).

If your child has a specific condition, the relevant local or national support group, may be able to provide advice or help. You will be able to find many of these in the Useful Contacts section. Some of these support groups have medical experts of their own, or it may just help to talk with parents who have had to face similar situations or make the same tricky decision. There may be different approaches that other families have found, or simply a different angle on the problem. The Down's Heart Group, for example, is a charity that can give support and information to families relating to heart conditions associated with Down's Syndrome.

Another source of information is Contact a Family, which holds details of even some of the rarer conditions.

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When you don't get a diagnosis

Some parents will never get a concrete explanation of their child’s special needs. 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.

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 Holy Grail, 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 parents may need to learn to think of their children as a bit quirky or eccentric or fragile and stop searching for the perfect explanation.

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Strategies for coping when you don't get 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, that 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 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.
• Call Amaze. Our helpline advisers will give you advice and support whether your child has a diagnosis or not.

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Children who are fostered or adopted

Adopting and fostering children with special needs throws up a unique set of experiences and problems. Sometimes you will get a lot of information before you become a family, sometimes not much at all. Maybe you’ll feel all will be OK once your son or daughter is in your home and the social workers have gone away. Then, when it doesn’t work out like that, it can be hard and you can feel abandoned.

The majority of fostered and adopted children will have some sort of attachment difficulties. And asking for help with this doesn’t mean you are not being a good parent. Likewise, most fostered and adopted children will have other special needs and these can be difficult to diagnose or sometimes missed because you are busy dealing with behavioural and other issues. If you know something else is wrong, pursue it with your GP, child’s school or health visitor.

And don’t forget, the fact that you may be getting a fostering and adoption allowance does not mean you can’t claim disability benefits for your child like DLA.

If you need support, call the Amaze helpline.

There are sources of support specifically for adoptive parents or foster carers. Brighton and Hove’s post adoption team currently runs four groups for adopters - under-5s drop-in, parents with older children, lesbian and gay adopters and fosterers, and one for parents of children with emotional and behavioural difficulties or education issues. Visit the council’s website for more details.

Adoption UK provides advice, support and training on all aspects of adoption and adoptive parenting. BAAF (British Association for Adoption and Fostering also offers useful services and information. After Adoption is for those who have been adopted or birth families and New Family Social is run by and for lesbian, gay, bisexual and transgender adopters and foster carers.