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Adult son without diagnosis - help please.

Lady Sybil Vimes

My son is 23 and at university studying a Masters in Physics. I am going to apologise now for the rambling post but would like to give all information.

When he was at primary school, the school raised concerns and he was observed over many months by an outside agency, they gave him a diagnoses of Aspergers and I proceeded to set in motion the formal diagnosis with doctors. However after the 1st hospital meeting my husband said he did not want to go forward with this and it was stopped (many arguments ensued but that is another story!)

I helped my son as much as possible, both his primary, and to some extent, his secondary school were supportive and we all worked towards helping my son manage.

Fast forward now to university, the first two years went well however his third year was difficult with quite a few meltdowns leading to him resitting this year. 

I have three issues:

recently his meltdowns have increased, mainly due to having to address situations which are unfamiliar but which he knows are important and therefore perpetuating the meltdown - these situations also include greater 1-2-1- interaction with his tutors for example presentations. These meltdowns have increased at home during the summer months and I am worried about him returning to uni.

The student support at university continues to state without a diagnosis they cannot help him over and above what they have already done - which is precious little.

My son has now agreed to go to the doctors but wants to do this on his own. I understand this but know he will not give the full story.

I don't know what help anyone can give me but I needed to get this off my chest and am hoping for something, anything. Thank you. 

  • in reply to Zomted

    thank you, I hope that a by product of starting this is that he gets some support from student support ho it has to be said at the moment are worse than useless. The only time he got any help was when I phoned them because I was worried for his mental health. However this soon ceased and my son feels they are “no help at all”

    thank you again for your help

  • in reply to aidie

    Thank you so much for your kind words. My son doesn’t want to speak to anyone about his condition but now realises that he needs help. Thank you for the link and I will definitely write my own history.

    thank you again

  • in reply to I'm done with Christmas Cards

    Thank you for your reply. My son has a high level of communication difficulties and will go into meltdown if a question is asked which he is not expecting or is phrased in a way he does not understand. I will certainly help him to write down his thoughts beforehand

  • That’s brilliant he wants to get a diagnosis and do it for himself - I’m an autistic adult but also work in a uni and diagnosis for me has opened doors to very helpful support even as a worker rather than a student. 

    It’s fairly likely that once he can provide evidence that he’s in the process of getting a diagnosis he may be able to get some uni support. It’s also worth him raising it with tutors/program leaders as they may be able to give him informal support with eg presentations (done that myself for students in similar situations) though they wouldn’t be able to offer eg extra time in exams without that being officially in place via the uni I don’t think. We certainly can’t.

    Best of luck to him with it all

  • i think its a very positive move that you son wants to do this himself. He wants a solution/diagnosis himself which is an excellent sign that he will manage his issues himself. The doctors are very experienced and where able to spot things in me immediately. Once he starts describing things a lot will come out. I recommend that he lists on paper all the reasons why he suspects he is autistic and bring it to the meeting so he covers all his issues. Include a list of family members if there are any.. The doctors (as in my case ) wanted to talk to my mother to get an early history. So you could help your son by having a list/history outline ready yourself. By the sounds of it you will be  key to his diagnosis. You know him best and over the most time.  Hope that helps.

    here is a link which helped me through an adult diagnosis, thanks thegirlwiththecurlyhair project.

    https://thegirlwiththecurlyhair.co.uk/2014/05/18/getting-asd-diagnosis-adult-uk/

    search in the blog tab for "adult diagnosis" if the link doenst work

    your son is awesome and you have his back which is also awesome.

    aidie 

  • Hi & welcome to the forum. I've never parented an autistic child / young adult but I have been one :-).

    You said that he might not give the full story at the Drs (actually I have experienced this with my own children and ageing father in law too!) - is this because he wants to hold back or does he simply forget in the moment? Many people here will attest to the benefits of writing down what you need to say to the GP and taking it along, either to refer to or even leave behind for the GP to keep.

    Hope that helps a bit.