What happens next?

Oh, I have had it up to my eyeballs with those who self diagnose. Had one today. She told me that she had done a course (She works in a school) on Autism, and it sounded much like her teenage son. I asked her whether she ever thought there were problems before, she said no. I am not saying he isn't autistic, but it does seem that with autism awareness, there are more people that think they are on the spectrum. I am now going to point out that it is a developmet problem, and that there is a triad of impairments!

I know for a fact that my son has difficulties, but can't say for certain it is Autism. Myself and the professionals are all in agreement that he has communication and social difficulties, plus sensory problems, and a lot does point to Autism. But as long as he is assessed fully, I will get the *right* diagnosis for him. He needs the right help, and he is getting it now even without the diagnosis and he is coping much better at school for it. In a way, we have worked hard to overcome many difficulties with him (dealing with the melt downs, the rigidity of thought, the lack of understanding of jokes etc) and he is much better in many respects. I worry that this will mean he doesn't get diagnosed properly. But at the same time, he has already been noticed by an Ed Psych who was observing a girl in his nurture group, and the Ed Psych mentioned he appeared to be on the spectrum.

I just want to know what is going on with him, how we can help him, and make sure he is happy and functioning.

I have a very special child. He is amazing. He drives me nuts! He is so frustrating! But the thing I now know is that it will be harder if we try and make him fit in. He never will. It is how we deal with things that will make life easier, and we will know how when we have the right answers.

I try not to read too much into conditions. I did at one point and I went crazy. I thought he couldn't be autistic because he wasn't having a melt down once an hour, then he must be autistic because he freaks out when routine is changed. Then we thought something else, and then something else.

I now have to trust the professionals. We will have some sort of diagnosis, what that will be is unknown. The teachers and SENCo are convinced he is autistic. I think if he is he is high functioning. But hey ho. I could speculate all day.

Sorry, I've gone on a bit here!  

You're very kind

Yes, the appointment will be the result of them examining the questionairres. After returning my own, it took them only a very short time to tell me that the indications were there, but the same letter also told me that at some point in the future they would send me an appointment. It was then a case, for me, of sitting there in my usual state of confusion, wondering what was coming next.

I carefuly avoided looking at any information about the condition. I am aware of the self-diagnosis risk that has arisen since the internet started carrying information. The reality is that people search for their symptoms, find conditions and illnesses that their symptoms hint at, then convince themselves that they've got the illness in question. GPs are getting a lot of people now, telling them 'I've got so-and-so' when in fact they haven't. This is a nuisance, and a nonsense!

I had to wait 12 months for mine, so I think that 4 months is relatively good. I think that a maximum 4 weeks would be better, and 4 days proper, otherwise the danger is that p[eople will use the same method of self diagnosis to make themselves fit the condition.

I am taxed by the lack of child assessment, and even more taxed by the poor assessment of girls, I'm talking on another thread with a lady on this very subject. From my own experience I know just how important early diagnosis is. As I said to someone else recently when she was 'filled with fear' over her (17yo) nephew possibly getting the same diagnosis. She thought his life was going to get harder, but I told her firmly that his life will actually start. Finally, an answer for him to the difficulties his life was presenting him with, plus being able to get the 'right' advice and support.

I wouldn't choose NOT to be an Aspie, even if I could, becaus ethat would mean choosing not to be me, but there are certainly a huge number of things in my past that would have been vastly different and infinitely less painful if I, and my family, had known sooner.

It sounds like you've been chosen to have the care of a very special child, and that makes you a very special parent. Enjoy the ride!

Thanks codger :)

I did in fact have a letter through the other day inviting him to a CHOICES appointment with CAMHS. I am pleasantly surprised as we only have 4 months to wait for it, and she said they were working hard to bring all appointments forward!

I am assuming this appointment is a result of the questionnaires??

P.S. Sorry I didn't reply much sooner. This site is rubbish on IE but seems to be nice on Chrome.  

Generally, (I'm assuming which ones you're talking about) the questionnaires both indicate whether or not one is necessary, and if so also form part of the assessment itself. Your view is vital to the process as you know best how he lives his daily life and what's going on for him.

My assessment took 2 hours after waiting a little over a year for it, following an 'urgent' referral. I'm given to understand that it varies according to the circumstances in your part of the world, but it's a valid question for you to put to the people responsible for carrying out the assessment. Sadly, there's no guarantee of a straight answer, the difficulty being that there isn't a consistently applicable timescale/beaurocratic process across the country, and of course unpredictable circumstances can get in the way, although this last is true of anything, any time!

You should get an answer reasonably soon as to whether they will schedule him for further assessment, which sounds highly likely, but I'm afraid that you may have to continue for a while as you are, yet. Keep going as you have been, the next stage is at least 'in sight' as you've been properly referred, and don't forget to keep coming back here for your own vital support!