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Some questions regarding to autism assessment

NAS82874

Dear all,

first of all, thank to everyone who replies to this forum. I have some questions I want to ask before my autism assessment.

1) I’m being referred to psychiatry through NHS, today I received a call from them telling me to set up an account with them. After that I asked when will my assessment be and the person who answered the call said he also doesn’t know, and he said he would get back to me on that but nothing has happened since. So I was wondering if anyone who has also been referred to psychiatry in the past and has had their assessment could let me know what usually happens after setting up your account and how long you are normally expected to wait for?

2) My family aren’t close to me (I started boarding since I was 5 years old), and my mum might even be considered a bit abusive (when I was doing researches online a lot of things she did to me in the past are listed as abusive behaviour, which including but not limited to hitting me, insulting me, controlling my finance, won’t allow me to eat as a punishment, hitting me while I’m trying to eat so I would cry and chock myself etc.). The reason I’m mentioning this is because I’ve heard during a lot of autism assessment people are being asked to bring their parents or ask their parents to fill out questionnaires about their childhood. My mum even insulted an autistic child in the past(not in front of him, she was acting super supportive when we were visiting the child’s family, and immediately made fun of him after we got on the car after the visit). Because of her behaviours I’m super nervous about letting her know I’m even considering of getting myself assessed. I am already assessed with dyslexia which she doesn’t know about, and she often makes fun of my speech because sometimes I can’t speak properly or say what I’m thinking. She also finds the fact I only started speak when I was 3 very funny and often used it as an insult to shame me during conversation.(she thinks my delay in speech proves how stupid I am therefore it’s a great tool to insult me even I’m already an adult)

3) I am currently seeking for assessment because of two main reasons, one being that my university told me I could receive support from them if I’m autistic, two being that I don’t have any friends or family members that supports me so I want to know if it just me being a horrible person so people don’t like me or there’s actually something wrong with me.(I only started to look into autism after everyone I spoke to in university, this is the first time I actually speak to people, have told me that they think I might be benefited from getting an assessment), but I’m unsure if there’s actual benefits of having the assessment and kinda want to back off, especially after having to constantly worrying about 2). The only benefit I have found out is PIP, which according to many stories online it’s barely possible to get anyway. So I want to ask what’s the actual benefits of getting diagnosed? 

Again, thank everyone who answers my questions, I know I’ve said a lot and I am sorry. Also sorry for my grammar and spelling.

  • I'm so sorry to hear that your mother is unsupportive to put it mildly. They do normally ask for input from family, but it isn't strictly necessary. Many people proceed without. You could present other childhood evidence if you have it: old school reports, video of you as a kid, old diaries etc

    The benefits...yeah! We end up having to fight regardless for the practical ones albeit it places law on our side. That said, I found the benefits in self-understanding, autistic community and self advocacy to be enormous, even at times miraculous.

  • NAS82874 said:
    Because of her behaviours I’m super nervous about letting her know I’m even considering of getting myself assessed. I am already assessed with dyslexia which she doesn’t know about, and she often makes fun of my speech because sometimes I can’t speak properly or say what I’m thinking. She also finds the fact I only started speak when I was 3 very funny and often used it as an insult to shame me during conversation.(she thinks my delay in speech proves how stupid I am therefore it’s a great tool to insult me even I’m already an adult)

    You don't have to tell her. Actually I would advise you don't (my mother was the exact same way and would even try sabotage things I tried to do, the only fix for that was to cut all contact with her) you aren't a minor so there is no reason they should ask for your parents to be involved anyway (you know what your own childhood was like, you were there) and if they do just explain she's not likely to be helpful and  it would be too much to ask her. And anyway it would be a huge ableist red flag if they still wanted to talk to your parents rather than just believe you as an adult.

  • I'm just so sorry to read of the problems you've had with your mother.

    I regret that my comment is useless in terms of any practical help, but your post just really moved me; so that I felt I had to offer some sympathy.

    Take care,

    Simon

  • Just to really say I agree with the other commenters, you don't come across as a horrible person at all and it sounds like you've been through some really challenging experiences. I would say the main benefit of assessment is self-knowledge and awareness of why you are as you are, which many of us find quite life-changing, in terms of explaining why we've struggled and being able to stop blaming ourselves for being different or less successful in certain ways. There might also be reasonable adjustments that can be made for you at university or in the workplace in the future.

  • You don't have to have a family member complete an interview of questionnaire, I was assessed without. I would just tell them you don't have anyone that can do it. 

    If you are wanting the assessment to get DSA support, give the assessor examples of struggling in education specifically so that gets mentioned in the report, (especially if you are from Wales as the wording for DSA evidence for autism from Student Finance Wales specifically mentions that you need to evidence difficulties in education). Are you already getting DSA for dyslexia? DSA usually funds a mentor and assistive tech for autism but presumably you already have the assistive tech and study skills already so it would just gain you mentor support if you wanted it. 

    Also if you are ready to talk about the history with your Mum, you will probably find your university offers a much better counselling service than anything you could access on the NHS. 

    For me, there aren't many benefits personally to being diagnosed, but lots of other people say they feel relieved, or they have more understanding now, or they can access support they couldn't before. If you are working your employer is required to make reasonable adjustments if you have a disability - this could be helpful to you in future. 

  • Nothing to apologise for. It sounds like it would be worth checking if you have PTSD from that abuse, it seems very likely, especially if you are also autistic as we seem to get that more easily.

    I have not been assessed but the wait time is very long, it might not happen while you are in uni as it can be 3 years! Not the best news, sorry. So in the meantime you can do some online autism tests and self diagnose, the uni should still give you accomodations. Especially if you have any diagnoses for stress, anxiety, depression etc. I don't know if it is faster to assess PTSD or to get help for it. You should be able to get some counselling for it. The uni should have a counselling service too. If they are only offereing you help if you have a diagnosis that seems like the best reason to get a diagnosis! But like I said, since that is so slow then just the fact you have been referred for one should be enough to access that help.

    I would not be telling your mother let alone have her accompany you, it is not necessary at all, especially as she is not supportive. It might help if you could get your school reports. The fact you were late to speak is good evidence. 

    You are probably not a horrible person, you come across well in this post. It is likely that you have no confidence if your mother has bullied and abused you like this. You could also try finding help for abuse victims.