GP's not helping with diagnosis - advice please

Thanks for providing more information

I was particularly interested to read that your niece is obsessed with food. I have Asperger's and was really obsessed with food as a child, but I have always been very slim. I am still interested in food but this has morphed into an interest in nutrition and the constituents of food. In the autism jargon these obessions are known as 'special interests' and can be very enjoyable. Of course it becomes a problem if the interest takes over someone's life to such an extent that it causes distress or a risk to health, but it sounds as though your niece gains enjoyment from food. At her age her food can be controlled by others to some extent, and as she matures she might start to naturally exercise more self-restraint, which is what eventually happened with myself.

The issues with grass might be a sensory, tactile issue.

Problems with running and not being able to ride a bike might suggest possible motor coordination issues, which are quite common in Asperger's.

It is quite common for girls with Asperger's to have one close friend, particularly in primary school, but struggle with groups of children. Friendships can also be unstable with problems maintaining friendships, particularly if the child becomes possessive or overly clingy.

There are symptoms of concern, from what you write, so it is probably wise to keep up the pressure with the GP. 

It would help if you are able to, to give some more information about the types of behaviour your neice shows.

She is still very young and more signs of Asperger's may or may not become apparent as she gets older.

I am interested to know the following:

Does she have any interests that seem obsessive in nature? Does she talk about the same thing or engage in any repetitive behaviour?

Does she become unusually upset when something changes or she does not get her way?

Is she very good at some things while showing delays in other areas?

Does she interact with her peers?

Does she display any unusual motor mannerisms like walking on tip toes, flapping arms and hands, or pacing, particularly when excited or stressed?

If she is functioning well and is not distressed by her signs and symptoms, it might be wise to carefully observe her behaviour while compiling a list of anything that raises concern. You could reapproach the doctor at a later date if more evidence has come to light. However, I would argue that in most cases, autism should be diagnosed in childhood. It is very rare for a child to avoid the negative effects of undiagnosed Asperger's, and recombinantsocks experience is probably the exception rather than the rule. Most children with undiagnosed Asperger's do require intervention and are not surviving well without a diagnosis. Therefore, if you are concerned enough by your neice's behaviour, I would definitely pursue an assessment. Prevention of poor mental health is surely better than cure.

And not all parents have Asperger's just beause their child has the condition. While Asperger's is usually inherited, there is not always a direct mode of transmission even though isolated traits may occur in relatives, but then isolated traits can occur in the population as a whole.

It is sadly too common for parents to be told to go on parenting courses when the problem is in fact a biological one and not caused by poor parenting. Certainly the parents might benefit from advice on how to parent their child if the child has autism, but just telling parents they need to attend a class is a classic case of being fobbed off and not getting the answers they really need.

If the child is behaving unusually but does not have behavioural issues that require treatment then the doctor may advise that the parents should focus on parenting skills. There are lots of people that are unusual but they do not require treatment by doctors. Many of these odd people would get a diagnosis if they wanted but they may survive well enough without.

The child may well be on the spectrum but not severely affected enough for it to be causing a significant enough problem to warrant investigation and treatment. I would have fallen into this category as a child and managed 56 years of slightly unusual living before I needed a diagnosis.

If the doctor has suggested parenting skills are an issue then it may be worth considering the possibility that one of the parents is also on the spectrum. The doctor may have picked up slightly odd behaviour in the adults but has not put two and two together to arrive at a suspicion of anything worth treating. Aspergers is frequently an inherited condition and it is fairly common for the child to be diagnosed or suspected and then for a parent to be found to be somewhere on the spectrum.

There is a free online test at aspergerstest.net/.../ that the parents could take.

You may be aware of the primary care patient surveys assessing GP surgeries. These are asking mainly about waiting times but also the extent to which patients are involved in decisions. There are also some special to disability surveys doing the rounds, such as one on learning disability, assessing how well GPs handle this issue.

There does seem to be a real problem with GP handling of diagnosis requests despite resolution by professional bodies to improve diagnosis referrals.

You can approach the Primary Care Trust in your area and ask for advice on getting a diagnosis, and explaining the difficulties, and just the act of doing so might spur some improvement.

Can I just say, little bit uncomfortable with the word disease. Condition or syndrome may be a more accurate description.

In answer to your question, you can go down the private route if you are not having much luck with the NHS, however, I would try again if your concerns are well founded.

I believe there are Care Pathways set out that practitioners should follow. I'd be tempted to see a different Doctor in the practice if this GP is obstructive about referral. It may be that the GP is not Autism aware and also does not know how Autistic girls mask and present. I've often found it helps if two adults go to GP to address these sorts of issues, but making a list of the things you've identified, before you go, will also limit the chances of forgetting something when you go, which is what always happens to me.

Good luck, 

Coogy

PS. A user of the forum has just posted a really nice poster re girls and diagnosis, feel free to share it. The list is by no means exhaustive, but it does highlight the difficulties we have.

community.autism.org.uk/.../autism-girls-signs-poster