I'm going to the docs with my 17 year old on Wednesday and would appreciate some advice on how best to approach it. He went a few months ago and came out with advice on mindfulness and exercise and new migraine tablets!My son's struggled throughout school, though mainly with the social side of things until recent years. He's a bright lad and was predicted great grades at GCSE which he didn't achieve. From childhood he's had a lot of indicators that suggest he might have ASD (and his uncle is diagnosed, his father also shows many traits). My youngest is currently awaiting assessment. I'm just concerned that we'll only have 10 mins to get the message across and I've had no success so far. He was referred to a paediatrician a few years back but he was referred for 'migraine' (vomiting, torpor, total inability to do anything but no real headache, went on for at least a week each time so missed loads of school) and paediatrician was very dismissive when I tried to raise the possible ASD issue. He has obsessive interests (though at the moment he doesn't seem interested in anything, he just lies on his bed with his headphones in), his work is chaotic and his anxiety levels are really high. After a few years a high school he did form friendships but he shows little inclination to see these friends outside of school. As he's got older the autistic traits have become less obvious (though he did say he's called Robot at school) but the anxiety and sleep problems (doesn't get to sleep till early hours and on Saturday it was 5.30am) have got worse. As he is now I really don't see how he's going to pass his A levels but more importantly he's become very withdrawn and having regular panic attacks.Sorry for that ramble. I just wondered if there was a questionnaire of something that I could use to focus the conversation with the doctor? My son's not big on talking (or able to identify his emotions) so something like that would be very helpful.
I see that you have your son's appointment tomorrow, so I am just jumping in with a few links that might help:
The first link is to our helpline:
If you have questions, or wanted some advice, you may like to contact our Autism Helpline team. They can provide you with information and advice on your issue. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.
Links to issues around diagnosis:
If you were interested in finding out if your son/daughter is on the autism spectrum, they would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one: http://www.autism.org.uk/about/diagnosis/children.aspx
If you are looking for a diagnosis for your daughter/son, it is very important that you see someone with experience of autism spectrum disorders. Details of diagnostic services can be found on our Autism Services Directory: http://www.autismdirectory.org.uk/services/autism-services-directory.aspx
You may also want to look at our section that provides advice for parents, relatives and carers of people with autism: http://www.autism.org.uk/living-with-autism/parents-relatives-and-carers.aspx
It might also be useful to pass on information about autism for health professionals when seeking a diagnosis. The following page includes information for a range of health professionals: http://www.autism.org.uk/Working-with/Health.aspx
You may like to have a read of the National Autism Plan for Children to see what you are likely to expect and what you can ask during the assessment . Please scroll down to the bottom of the page and go to page 3 on summary report, page 11 for full report for the Essential Components for a complete multi agency assessment: http://www.autism.org.uk/about/diagnosis/children/national-plan-children.aspx
Hope that this information is helpful as a starting point.
Thanks so much for sending all that through Nicky. Unfortunately once again the Drs appointment was a total waste of time. We said son's not sleeping and anything we said after that wasn't heard at all - Dr just spend 10 mins telling us that he needs to use 'Thought Blocking' and look up sleep hygiene advice online. We've been going with the same issues for years and never got anywhere. I've got my son to fill in the ASQ which he scored 26 on, but some of his answers I would have said aren't an accurate reflection of his nature, more of how he has learned to be if that makes sense? He's having counselling at school and I've suggested he takes the form with him to his next session to discuss with her as she may be more open to actually listening to him. So, GP was useless again but we did have useful conversations about autism and anxiety as we walked to/from the Drs!
This might be why I look things but that a good thing. When it dosn't work (which by sound of wont) and then what next? There is point where have to start look at other options.It can be the most infuriating thing sometimes. I had to go throw so much nonsence before they allowed me to see someone who was actually qualified to do the diagnosis for people with Autism (Yep I was diagnosised by someone who works for the NHS). (I found out latter some else sent me to previously it which NHS said was, was not qualified to do diagnosis of Autism. Told me I did not have a form of Autism and some other rather incorrect things about Autism.)Put it this way the one who was actually qualified didn't have problem doing diagnosis in first place. I was told that had I had Autism. Then afterwards I brought out a lot of supporting medical edvance documenting the way I do things for many years. It was issue of what not to put in to the report as there was so much. I thinking about going pubic with some things and how bad thing went. The only reasion why don't want to talk about is because I don't want to put people of from getting diagnosed. I have meet over people who have diagnosed and parents of people have been diagnosed they all get rather upset/angry about what happend with me.
What worked for me last year (for myself) was to go right in there and say I want a referral to get tested for Aspergers. I mentioned my symptoms too but I stated the purpose of my visit very clearly right from the start. The GP gave me the referral right away.
26 on the ASQ isn't very high, but there are other online tests you can use. Some of them show me to be only a little more than borderline, while others rate me as quite far into the spectrum. The psychiatrist told me I am not a borderline case. Your son should rate himself as he is on his worst day, not his best. Then you can go to the GP again (and maybe see a different GP) and tell them the results of the online tests (assuming that they indicate your son is on the spectrum) and directly and specifically ask for a referral.
Thank you for sharing your experiences. I'm sorry you had such a difficult time getting the diagnosis and I hope that now you have that you can get some support.
Hello there, I'm really sorry to hear you are struggling. Sadly, it seems to be very common for GPs to ignore ASD issues, plus, many of them simply don't know enough about it. I could suggest the following:
Downloading, printing and completing these tests and taking them with you on the next visit https://www.autismresearchcentre.com/arc_tests
You might also find it helpful to write a letter to the GP using the header Request For Diagnostic Assessment Under S.3 of the Autism Act 2009.
If neither of these get you anywhere with your GP, the next step would be to inform your MP of your ongoing struggles.
I speak from expereince. After struggling for almost 9 years to get the referral made, my MP stepped in to help and in March last year I was finally assessed and diagnosed.
I hope this will help. Your son seems to be experiencing a lot of the same things I do, but since my diagnosis I've been able to get proper medication to help with certain things, access to proper counselling and CBT and I'm on the waiting list for further assessments. I hope he doesn't have to wait as long as I did.