Autistic children can be stubborn and difficult but surely not all their behaviour is due to the autism? Raisingkids.co.uk's guest expert Jill Curtis explains how fear of change affects the autistic child and how to avoid excessive labeling.

Raisingkids member's problem
My 8 yr-old son has been diagnosed autistic, but where do you draw the line between funny individual quirks or his medical condition? For example, we have to break-in his new shoes (to make them look older) before he'll wear them, and he has severe learning problems at school. Autism or something else? Now he's been diagnosed all his behaviour is explained by his condition. Before the diagnosis his behaviour was his own. I feel like I have lost my son through the diagnosis. Where do I draw the line?

Jill Curtis's advice
Many parents complain that once a diagnosis is made, their child is no longer seen as an individual, but instead becomes the 'autistic boy', the 'ADD child', or the 'dyspraxic little girl'. This is something to be aware of as children can be dismissed with a careless - 'Well, she has Asperger's'.

It sounds like you've gone through the dreadful ordeal of not knowing what was happening, or how to help your child. The strain on families during this time is colossal, and support isn't readily available. A recent study showed 56% of parents saw 3 or more professionals before getting a firm diagnosis for their child. 40% waited more than 3 yrs for a diagnosis, and 10% waited 10 yrs of more. I prefer the term 'autistic spectrum disorder' because the symptoms can range from mild to very severe.

Perhaps the learning problems you mention are linked to poor attention skills? Some autistic children have learning difficulties, but a significant number have average or superior skills. Assessing these may present some difficulties, but perhaps this is something to press for. You have probably noticed your son finds it hard to cope with change and your description of having to batter his new shoes to make them look older is all too familiar.

Parents ask me why nobody warns them about these issues. One family learnt the hard way by trying to take their severely autistic child on holiday to France. He became so distressed they had to return. No one had prepared them for his obsessive need for routine. Remember that fear is often behind a refusal to try anything new.

There's no doubt in my mind that living day-in day-out with a child with an 'invisible' disability is one of the hardest things for a parent. A child with an obvious physical disability brings up an immediate feeling of compassion in us all, but a child who doesn't look disabled, yet exhibits signs which are hard to understand, can wear down the most devoted parent. A dad recently told me that anyone who hasn't cared for an autistic child can't know the meaning of the word 'stubborn'.

Remember you have to be a voice for your child, and if you want to get him more support for his learning problems, you'll have to fight for it

• More Answers From Hidden Disabilities Specialist, Jill Curtis
• The 'Autistic Boy' - What's Wrong With Labels?
• Undoing Your Child's Label
• Online Discussion: Parents Of Autistic Children