fresh adult autism diagnosis

ellie451

Struggling with so much at present. My parents do not believe the diagnosis is correct (Im 45) One step parent doesnt want to discuss it (his grandchild is non verbal at six) He is making me feel like a fraud here and guilty for even seeking out a diagnosis. Ive updated Universal credit and PIP about the diagnosis and now stressed this will trigger something on system.Im also in a dispute with landlord over dodgy work done/not done by their workman, im feeling it everywhere. Due to move and go to uni in sep , juggling motherhood and really feeling everything! Dont know who to talk to

Zipz

Hello @ellie451 If you've been through an adult ASD assessment you've been through a lot.

You've talked and completed formed about things that have troubled and challenged you your entire life.

The procedure is exhausting. People don't do it for a fashionable label and diagnoses aren't doled out like rosettes.

I fear it is quite common for diagnoses to be doubted by family members. It is even common for an adult to experience "imposter syndrome".

I felt relief when diagnosed three months ago but I've also subconsciously struggled against the diagnosis and burned out as a result.

You might want to find groups locally to meet with other neurodivergent people… or not. Remember you're the same you as you've always been. You didn't "catch" autism on holiday.

Inform your uni. It's important that you get whatever help you need whilst working towards your degree.

ellie451

https://forum.scope.org.uk/discussion/comment/1033965#Comment_1033965

Thankyou for responding to me so appreciate this and everything you say is highlighting exactly how it is going on for me .Has your nerves settled in after three months ?

As I had ptsd the DSA part of the student finance are supporting me much the same as autism so have added that now too they’ve been super helpful and supportive . I’ve not told the college yet don’t know how to tackle it as I don’t want them thinking I’m not capable before I do 😂

Zipz

There's a department at your college responsible for the welfare of students with every disability under the sun. They will not think you're incompetent because you have ASD because they've met countless successful autistic students before.

Tell the people that need to know about your diagnosis. You don't need to reveal it to anyone else.

ellie451

https://forum.scope.org.uk/discussion/comment/1033977#Comment_1033977

Thanks for the insight into this . You are right and very true

WhatThe

ellie, congratulations on your autism diagnosis 🤩 (and you, Zipz)

I think my parents would have been cynical about mine had they known!

The first shock was that it didn't matter to people when I told them - it made no difference. I've learned that people can forget and I have to remind them. My daughter occasionally has to remind me she is also autistic!

It is likely that my late father was autistic (plus my undiagnosed siblings). Is it possible that someone in your family is afraid that they have this inheritable condition?

My late diagnosis completely floored me. There is a small community here who do understand what you're going through. Nobody imagines it, nobody would choose it and diagnosis is not handed out like a prescription. I found it impossible to believe or understand when my daughter first identified my behaviour as autistic and I only allowed myself to fully believe it when I got the diagnosis. It's mine now, no-one can change that but I'm not sure society in general understands any more than I did back then.

Take care.

Zipz

https://forum.scope.org.uk/discussion/comment/1034014#Comment_1034014

@WhatThe Thanks for sharing your experience. I found it uplifting and helpful in moving towards self-acceptance.

@ellie451 I'm guessing that your stepfather can't grasp your diagnosis or is belittling it because his grandchild is nonverbal and that's how he perceives autism. Nonverbal autistics can become verbal. Would he say his grandchild was cured? I doubt it because his/her speech would expose other symptoms of ASD. Autism is a very diverse spectrum.

Kiki23

https://forum.scope.org.uk/discussion/comment/1034024#Comment_1034024

@Zipz Its interesting what you wrote here regarding perceiving autism. When I tried to talk to my 74 year old mother about me going for an autism diagnosis (age 51) she looked at me and said "I thought its when you cant read or write"

I just looked at her in disbelief lol

There has been alot of hurt and trauma in my family line but I am now seeing signs that there is a high chance that a few of my family members have it, however no one wants to talk about it (Ive tried talking to siblings and parents but they have made it clear that they dont want to talk further about it which shows me their not interested for what ever reason)

So I will now choose to walk out this journey alone…

Actually Zipz, I think you were the first person to respond to a comment I had posted a few weeks ago reg my assessment. Anyway I had the assessment and they got in touch with me a week later to let me know they have accepted me on to the waiting list BUT it is a 2 1/2 year waiting list!!! I was shocked and burst out crying telling him I cant wait that long for help I just cant! The distress on my face though was enough for him to immediately get in touch with several mental health services after our video call had ended as my medical records had all my information with whats been going on with me in recent months/years which had been confirmed by me when I spoke to him at my initial assessment and I think he was just generally concerned about me and my wellbeing (My medical records had information about me being in a VERY VERY DARK PLACE, burnout and generally not coping well mentally and with day to day stuff which I believe has ALOT to do with the undiagnosed autism and the lack of not getting a proper diagnosis)

Anyway the mental health team got involved the next day but couldnt do much for me when they came to my home despite seeing me very distressed but they could see I needed long term help which they said they couldnt give as my needs were so complex (apparently my local "home mental health team" only help for a few weeks so they said) but they have now referred me to adult social services and Im now waiting to get my first ever care needs assessment done.

Im not sure what to expect from them to be honest as ive never had a needs assessment done but im hoping and praying I will get the help ive been desperately crying out for…

Sorry if my message sounds all jimmble jammble Zips

Zipz

@Kiki23 The length of time for a full diagnostic assessment on the NHS is so cruel. I think that makes it increasingly acceptable for for people to self-diagnose with support from GP and any other parties involved. But it's no substitute. The positive news is that you're getting a care needs assessment done.

ellie451

https://forum.scope.org.uk/discussion/comment/1034014#Comment_1034014

Hello thanks for your insights and response to me. Thankyou for your congrats , that is lovely, same back to you and your daughter. The step father is clearly right all the time. He says that ive managed this far and is nothing in comparison sort of thing to his grandson, my nephew.

My biological father on other side thinks they've got it wrong as he has seen the damage an autistic diagnosis can have on his patients.His special interest however is music and has just semi retired this year at the age of 75, his last concert he orchestrated and played had a whole village involved (His wife did all the planning and the group they are in) They are both being very kind in their own ways but i do feel like a child seeking out the diagnosis.

The diagnosis was done via zoom which my sister who has the beautiiful non verbal child says is not what she wants for his diagnosis.(He still has not been correctly diagnosed at nearly 7 we are in oxfordshire they are gloucestershire ) I dont bring it up with her however as I dont want to upset her , she did say "oh i hear youre autistic hardly surprising with all the rocks, little houses and corn dolls you used to collect as a child."