Hi there, after a lot of discussion my wife and I have finally decided to go and see our GP to see if we can get our son assessed.
The main problem we have always had, when talking to his school etc is that nobody else sees the issues we see, at school he is the modal pupil, popular, sporty kind others even going out of his way to look after younger children (he is year 5) the only issues the school themselves have identified is his constant struggles with handwriting, and a tendency to drift off into his own little space in class.
However at home we have a different child, from the second he gets home from school, it is almost as if it has taken all his energy to keep up appearances at school and we get mr hyde.
He is so easily distracted we can ask him and his brother to get dressed as we are going out, his brother will go off and do it and he has got distracted by something and is doing something else.
He is extremely sporty and active which is mostly a positive for him as it gives him an outlet for all of his energy, but if things dont go well or he feels he didn't do something to the best of his ability he will get extremely distressed floods of tears, if you try and console him he gets angry with you.
At home every bed time is a battle from the second you tell him its time to go to bed, he shouts at you gets angry then when he eventually calms down finds every excuse possible to drag out going to bed from thinking he's seen a spider to suddenly needing to ask you a question etc etc.
If he plays a computer game at home the slightest thing going wrong sends him into a rage, shouting screaming, smashing things hitting himself.
He doesn't have any problems with speech language, or in social situations (although generally nervous to talk to new people once he gets past that he has no problems making friends)
He has massive issues with fine motor skills, writing seems physically painful for him and eating meals he will often revert to using his hands (again when we are out he will persevere with a knife and fork)
We really need some help we have tried talking to the school and mentioned it to the GP in the past but as the boy that everyone else sees is so well behaved everyone dismisses our concerns.
Can anyone offer any advise on what we should be saying to our GP tomorrow
We have an information page here on the NAS site which covers many different aspects of the diagnosis/assessment process, which you can find here: http://www.autism.org.uk/about/diagnosis/children.aspx
One of things recommended by the NAS when it comes to diagnosis is keeping a behaviour diary of all the types of behaviour that you find concerning, as outlined in your post, which seems like it would be particularly useful in your case given how you say your son behaves differently at home vs out in the world.
You also might want to look at the 'After Your Child's Diagnosis' page - http://www.autism.org.uk/about/diagnosis/children/recently-diagnosed.aspx - if it turns out your son is diagnosed with ASD, you can find more information, including about educational support, financial assistance, how to discuss diagnosis with your son, and so on.
Hope this is of some help,
Ross - mod
We are in a very similar position to you, our daughter (8) can manage to keep everything 'in the box' as we say for certain periods of time especially at school, clubs etc. Reading what you have written it sounds so similar to what we go through with our DD on a daily basis and even though i cannot offer you advice for the GP (we are seeing one for the second attempt in two weeks) it is reassuring just to hear someone else who is finding difficulty with getting a diagnoses or even any recognition from the sources who 'could' be helping. I hope you manage to get some answers :)
So I thought id give an update on this, After seeing the GP he gave us details for self referral, we filled in all the questionnaires, and today heard back, after talking with his school they have decided that he does not warrant further investigation and have given us a really unhelpful flyer. I think the consensus is that we are bad parents, because he is so well behaved at school we must be causing any issues he has at home.
We feel so helpless, everyone just tells us our son is as good as gold but at home we get a violent angry child who never seems happy.
This is awful. Having just read your original post, I can see many similarities with my daughter, who’s 14 today. After speaking to the GP for the second time, he decided to refer us. We’ve just given the paperwork to the school, and I know full well they won’t have anything to say about her. Just because they are well behaved in school, probably due to having a routine! It doesn’t mean all is well at home. Someone needs to intervene. Have you seen the area school nurse? They might be able to do a home visit to talk to you with your child...?
I really can’t offer any advice, as I’m new to all this, but I can feel your frustration and disappointment from those that should be fighting your corner. Keep us posted x
Have you looked into getting a private assessment? I know cost will mean it’s not an option for everyone, and availability will vary locally, but I do know it is possible.