Autism diagnosis. Has anyone thought they were autistic and assessment has said it's not autism?

[adultasd]

I've not phrased that well, sorry.
I'm awaiting assessment but am wondering what happens if assessment says someone isn't autistic. What are the potential differential diagnoses? I'm 45 and have learnt to respond

It's so comforting reading your replies, thank you so much.

Can anyone tell me about the assessment itself please?

My dd is waiting for an assessment too, she’s 17 and we’re going private because we want an answer before university, like you I’m worried it will be negative even though I think she is autistic, I think it runs in the family because although it’s never been diagnosed we all have very similar experiences, especially around the social side of things, I think that’s why it’s not noticeable in the family because it seems normal, but things did get very bad for my dd and it led to quite severe self harm which is what has prompted me to get the assessment.

I’ve filled in a form about her baby/child hood and the first assessment is in October, apparently that will give an indication about whether it’s worth carrying on with the full assessment. It sounds weird to say I hope they say she is autistic but it will mean she will know why she is how she is and she can get additional help at college and university. The assessment is being done by someone who specialises in assessing women so knows the coping mechanisms they have.

Yes - my son - but in between his first assessment (borderline ASD) and another ASD assessment a five years later - we had started a brushing technique 6 months before his last assessment. He was assessed as completely NT with acknowledgement he had had ASD traits for most of his life which were now going. Google primitive reflexes not doing dormant and see if that relates to you.
Also my daughter actually who was assessed as a teen. No ASD but three years later we think she has ADD and is being assessed for that.

After reading your list I can see you have lots of sensory issues. Did you bum shuffle as a baby by any chance? I really think you should google infant reflexes or primitive reflexes not going dormant as I think that might apply to you.

Oh my goodness op you’ve just described me. I can’t believe how alike we are.I but in with conversations at times too as don’t know when to cut in. I hate doing it. Not wanting the wrong idea so giving lots of detail to avoid misconceptions is a big thing with me too!!!! Ditto oversharing. I get so anxious if I don’t. My dd is struggling with anorexia and has just been diagnosed with ASC. One of my ds’s is struggling with mental health and CAHMs have been using a working diagnosis of ASC. We’re pretty sure my other son had it too. I’m so sure I have it I’m not sure I need a diagnosis and I’m scared I wouldn’t get a diagnosis too as would have no excuse for my traits iykwim.

Has not had.I’m 53

My dd is refusing to accept her diagnosis and I understand as wouldn't want anybody to know if I got one. Feel I’d be looked down on or pitied.

Sometimes people do try the 'look down and pity'. It's not comfortable but I try to gently educate them out of it

Btw, a lot of your descriptions match my DD’s (and mine). When I started to fill in the form for my dd I realised how a lot of what she does could be seen as a bit out of the norm

@ittakes2 no bum shuffling. I was walking at 9 months and cried if taken to the beach as I hated the feel of the sand. Sand is fine now although I'm not keen on it wet and stuck to my feet. I'll have a look at what you suggested.

I'm sorry that posters' dc are struggling

When I've mentioned to people that I'm awaiting assessment for ASD they look very confused and say they don't think I can possibly be autistic because I've done ok at life. I have a good degree, two post grad diplomas and a handful of other qualifications, was married, 3 dc, cope fine (to their eyes) and generally don't fit their concept of ASD. It's weird.

I've also remembered that I recognise people by their walk before anything else, by their number plates, and have quite a photographic memory. As a child in hospital I could identify my mum walking down the corridor at visiting time by the sound of her footsteps. I have a low tolerance to temperatures above about 22 degrees C and get very irritable about being too warm. I find being very cold painful.

I’m just starting on this with dd (17) managed to get an appointment with the go to look at getting a referral but she just wasn’t interested so am having to look at going private. I just don’t know where to start.

Hi adultasd - I was walking at 9 months (same as me and my son) meant you would not have crawled long enough to trigger some of your infant reflexes to go dormant.
I have copied this. What are primitive reflexes?
Primitive reflexes are foundational motor responses to sensory input that appear in utero or shortly after birth for the purpose of defense and survival. They are the foundation for higher level motor, cognitive or intellectual processes that develop as a child matures and takes on increasing demands.
Most primitive reflexes integrate within the first year of life meaning that complex, adaptive and purpose-driven actions can over-ride automatic responses. Postural reflexes, which typically begin to develop in the second year or life, are automatic reactions with a higher level response. They develop a child’s equilibrium reactions for balance and coordination as the child begins to sit, stand, walk and run. Their development is heavily influenced by the integration of primitive reflexes.

Each reflex is associated with development of a particular area of the brain and lays the groundwork for control of motor coordination, social and emotional development, intellectual processing, and sensory integration. When primitive reflexes do not adequately integrate, persistence of these patterns may interfere with related milestones. When a reflex is present, it can be viewed as a signal that function in that region of the brain is not optimized. When difficulties in a particular area of functioning exist, research has demonstrated a strong correlation with the persistence of reflexes originating from the area of the brain regulating those functions.

If you don’t mind me asking OP how did you get the assessment? Is it a referral from your GP? I attended an autism awareness event via Skype and found i had a lot of a the behaviours they were describing. I’ve always struggled with making friends and new environments and have always thought it was just me and that maybe I was overthinking things and had social anxiety. I can deal with that side of it though but what I struggle most with is the sensory stuff- particularly after lockdown (has my tolerance somehow reduced?). If there’s someone on the phone when I am trying to have a conversation with someone I cannot concentrate and have to make an excuse to end the conversation. Little noises, whistling, the lad next to me that shakes his leg against the chair I feel like I need to escape and get away or else I will scream. Thankfully my DP understands when some days I just can’t bear to be touched (normally when I have been ‘oversocialised’ we call it). I’m not sure if this is autism or something else but it sounds like it could be?

I hope everything goes well with you and your assessment. It must be really good to be one step closer to knowing!

My GP referred me but took some persuading due to my perceived success age and she wasn't sure if there was much point.
I feel like things are more difficult since lockdown too especially with the sensory issues. I loved the quiet of lockdown. When the pubs reopened there was lots of late night noise again and I struggled with that.