Assessment with or without parental involvement.

Thank you, I was going to see if my wife could be used, she has known me since I was 18 and has witnessed most of my struggles. I’ve lived with her longer than I lived with my parents. She is a District Nurse and sometimes has autistic patients, she’s more accepting of autism. I find the world only sees children as being able to be autistic. I sometimes wonder what they think happens to them.

I'm 51 and had my assessment 3 months ago. They spoke to a friend I had for 20 years to go through their questionnaire. It was to get an idea of how I interact with someone I am comfortable with, as the other assessment and interviews were with strangers, letting them only see one side of you. I think they asked about my habits and preferences. They didn't seem surprised at this. It is your choice: ask what they are looking for then pick the best person for the job.

I'm sure mum is autistic and wouldn't be any help, so my friend did the 1/2 hour phone interview.

I can always rely on your good sense, well most of the time! Yes I do most things on my own,  this should be no different. I’m the only person who knows what goes on inside my head.

Thank you for your reply, I think parents see it as an attack on their parenting skills. I learnt from an early age to not make a fuss, meltdowns would have been treated as bad behaviour. Most parents have one of their parents telling them how discipline and punishment should be metered out. They often miss the bigger picture. You are right, it’s just validation I’m looking for.

Yes. Like my mom answered to my teacher! That I’m perfectly normal just like her. We both stim, both wear always same clothes, often but two pairs, eat same foods everyday, both have similar sensory sensitivities, both interact with people in a similar way and have intense special interests. Why should she consider me “weird” :D edit: in addition my grandpa (my moms dad) belongs to the same clan 

Hi Roy

I feel the same, I am looking to seek assessment in the future and I’m trying to build my own profile.

It really shouldn’t matter as to weather you get your diagnosis or not but I totally get why your worried as I do because it’s some sort of self validation.

I have spoken to my mum with whom I have a great relationship with about my issues but she seems to avoid/ignore it. I asked if she could at least write down anything that stood out for her when I was growing up, all she said was I was an anxious child who cried a lot. I don’t think having her involved in the assessment process would help me any tbh. 
I don’t hold that against her of course as she probably feels guilty for not recognising my traits. Maybe she feels she has had enough to cope with from my father’s aneurism and stroke 2 years ago and it’s too much for her to think about….. who knows.

I would be interested to see how it goes for you Roy if your ok to share your experience when it happens and I wish you luck in your discovery. 

So true I think my dad is.  Always buys tons of the same product and stores it away incase he runs out of it. Very snappy when you don't understand or do what he wants.  Very embarrassing when he just blurts out stuff in public.

Regardless of the outcome diagnosis or not won't change you as a person but it will give an insight as to why you excel in areas others don't and struggle where others do.

It is a scary thought process in the build up to an assessment I can remember my thoughts were - what if I am autistic/or not, what will a diagnosis do other than label me etc.

What I can say is it gives you a better understanding of yourself.

I still have the same struggles/troubles after the diagnosis just I better understand why I do.  It doesn't change who you are. 

On a lighter note I have managed to hold a job down for 22 years and just recently started a new career which I am very much enjoying.

I'm a very determined individual and I try my best to not let anything get in my way.  Just keep battling through life .

Anyway best of luck with your assessment and I hope you get the answers you've been looking for.

Thanks, I too don’t have any old school friends, I always preferred my own company, it’s also easier to hide from the bullies on your own. Thinking about it, we never mixed with relatives. I have quite a few cousins, couldn’t tell you where any of them even live.

Roy said:

Any advice would be appreciated.

As an autist.....surely doing it by yourself is the "natural" and best way forward (in any event for a 56 yr old).....but especially in your case because you fear a "scuppering" may unfold if your mum is involved.  I wish you well with this, and I hope that you can keep a lid on the understandable anxiety you are now feeling.

Roy said:

often wonder if my mothers poor mental health is undiagnosed autism

As I've said before, I've also wondered about this with regard to my mother but she also fitted schizoaffective disorder and lately I think maybe she had both as autism alone doesn't cover enough.

If I had to choose one it would be SD.

My late father had meltdowns on a daily basis, nether parents ever socialised with other people, often wonder if my mothers poor mental health is undiagnosed autism, my sons are normal like me, just as strange as me.

I didn't have any informants when I was diagnosed at 50, I can't remember if I was asked, but apart from my parents who I didn't tell I was being tested I had no one I'd known since childhood. I think I was asked about it though and they were a bit surprised that I had no old school friends or cousins or anything. I thought that the inability to maintain friendships was one of the indicators for ASD?

Roy said:

I would often have to go to the front of the class and spit out the paper I was eating

Pica.

I didn't mention that at my assessment as I didn't know it was a 'thing'.

I thought all children ate everything in front of them whether it was food or not!

Lol.

Thanks Debbie, strangely I also had a stutter, if nervous it still tries to return. I remember one of your previous posts, I would often have to go to the front of the class and spit out the paper I was eating. I never knew it was autism related.

Alienatedhuman said:

Have you ever noticed anything weird about your son? “No! He is perfectly normal like me”

I so agree with this.

I think family members could be very unreliable witnesses.

I don’t Even understand why they need a family members involved for an adult. There are many families where more than 1 person is autistic. For them stimming or sticking to the routine or sensitivities are nothing weird. Have you ever noticed anything weird about your son? “No! He is perfectly normal like me”

Roy said:

I just don’t know which way to go, the email does say that the assessment can be carried out without an informant, I suppose I’m feeling guilt in case she does have something to say but then again I don’t want my assessment scuppered, I didn’t have delayed speech or walking

If I were in your shoes I'd be doing it without your mother Roy.

Both my parents had passed away when I had my assessment and I did  it without involvement of anyone.

I wouldn't have trusted my mother to have even understood the questions or remembered me as a child, not because of dementia but just because that is how she was (along with many other mental struggles).

Similar with my sister.

I also think that people who don't understand autism in the modern way could prejudice a positive diagnosis.

I'm glad you are able to go ahead with this at last.

Roy said:

I didn’t have delayed speech or walking.

I don't believe I did either, but I did stutter.

I also have a very good memory of being a child, going back to being a baby, so I was able to recount how I was/felt.

All the very best.