• Replies 8 replies
  • Subscribers 83 subscribers
  • Views 519 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Early signs of autism in low support needs adults? Freaking out before assessment.

sommersunshine

Hi guys! I'm thinking about getting assessed for autism and the main part I'm really hung up on is the early signs. I didn't really seem like a very autistic baby, but started showing lots of signs by age 4. I was a sensory seeker as an infant and had a love of spoons where I would hold them and look at them. I also used to cry when I couldn't express my ideas, as I was a slightly late talker but was still within the normal range. By age 4, I had strong food sensory aversions, was referred to an SLP for pragmatic communication issues, had very literal communication, struggled to make friends and understand social rules, was a diagnosed sensory seeker, and had black & white perfectionistic thinking. I also had chewlery & was stimming by then as well. 

However, I was great at imaginative play, and would often play with my brother. I was a bit bossy at times and would complain that the other kids were doing it wrong but had good play skills in general. For example, I would yell at my brother for passing the ball the wrong way or would yell at my dance class when people turned the wrong way. I was also very hyperempathetic and personified my dolls. I had to put them to bed because I couldn't handle them being in a box.

Also, I have always had great eye contact and have always been affectively expressive. 

  1. Is this enough early developmental history? Or I guess has anyone been diagnosed with this type or amount of history? I'm worried about wasting my money if I won't qualify. 

  • Can I ask, why do you put effort into freaking out? You are what you are. Being assessed and given a "label" doesn’t change who or what you are. Put it another way, (although not applicable to you as you are female). I was assessed for colour blindness many years ago. There was a reason associated with my work. If I was colour blind, it would have cost me that job because the job actually required being able to identify different coloured wires. By contrast being autistic doesn’t exclude you from anything or anywhere. Having an assessment helps you understand yourself and explain why some things happen as they do. Knowing yourself allows you to focus on your strengths and make choices that play to them instead of trying to make up for things you are not good at.

  • I didn’t have to give any evidence of a history with Autism (I’m from the US). However, my guess is this is probably enough evidence. Because for example:

    sommersunshine said:
    I was a bit bossy at times and would complain that the other kids were doing it wrong but had good play skills in general.

    That is 100% my daughter (age 8) with Autism. She is super social, but gets really hung up on things being done “the correct way.”

    So yeah, you sound like you were a lot like my daughter is.

  • in reply to Bunny

    These are perfectly valid links. Obviously, I had to ask AI where to find them but that's it.

  • in reply to sommersunshine
    sommersunshine said:
    Yes please!!

    Please note that the person who replied to you originally was posting AI-generated replies, which they have now undertaken to stop doing. These threads refer: AI replies and Termination of AI posts.

    Please see the advice in my own reply, above.

  • Hi and welcome to the community! 

    Whilst some of what you've described might be relatable to autistic people, we're not allowed to offer medical advice to each other here.

    I suspect you might not be in the UK, but will post the same resources that I usually share - both in case you are, and for others who will read your thread over time. If you're elsewhere, please let us know (just the country, nothing specific about where you live) and one of us can signpost you to other resources that might be more directly helpful.

    If you haven't yet seem them, you might these NAS resources helpful - they explain the main signs / symptoms / characteristics of autism:

    NAS - What is autism?

    NAS - Signs that a child or adult may be autistic (lists over 60 signs)

    You might find it helpful to note down all of the signs that you recognise in yourself (and perhaps also that others might have noticed), and then include this list when talking to your doctor, if you decide to get assessed.

    To learn more about getting assessed, this article is a good place to start:

    NAS - How to request an autism assessment

    It's from the NAS's diagnosis hub, which covers all stages of the process.

    For those who live in England, it also includes information about requesting an assessment via Right to Choose (which enables access to private providers who might have shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS).

    The NAS articles include links to some screening questionnaires that you can complete, to get a better idea of whether your suspicions are correct. But you might prefer to use the website below for this. It provides a useful commentary for each questionnaire, and enables them to be completed online (with scores calculated for you), saved as PDFs and - if the results support your suspicions and you decide to seek a formal diagnosis - printed off or saved to share with your GP.

    The AQ-10 or AQ-50 seem to be the most frequently used / required by GPs in support of NHS referrals. (RAADS-R might also be helpful, but recent research has thrown doubt on its clinical validity as a screening tool).

    Embrace Autism - screening tests

  • in reply to lostmyway

    Yes please!! That would be so helpful!! I have my assessment in mid April and am completely perseverated on it. If it's helpful, here's what I've currently got going on/a more detailed development history. I would take any advice/reassurance you have!! Also, if you happen to know how clinicians weigh collateral vs reports or other info (old diagnostic reports, report cards, etc) vs self report vs scales that would be amazing too!! I score very high, especially on the monotropism questionnaire and on the RAADS-R (I score between a 149-153 when the cut off is 65). My rigidity/perfectionism is telling me that if I don't get the perfect collateral then I won't be found autistic. Amd to specify, I am ok with not being found autistic, but not over poor quality collateral or overshadowing of my own experiences. 

    Here's a general overview of what I've got going on. It's not perfect but hopefully it gives you a good idea: 

    Infancy 

    • tactile sensory seeking since infancy

    • a bit late to start talking but still on time; would cry when I couldn't ecpress my ideas

    ~4 yrs old:

    • seen by OT for sensory seeking

    • difficult understanding classroom/playground unspoken rules

    • referred to SLP for concerns with pragmatic communication (very literal in speech & understand), found to still be within typical range

    • documentation notes early black and white perfectionism (ie if I can’t answer all the answers on the test, I refuse to take the test at all)

    • difficult sharing food unless perfect symmetry can be assured

    • intense sensitivity to food; arfid like eating habits

    • difficulty making & keeping friends

    • Inappropriate approaching others 

    ~12 yrs

    • special interest developing

    • video shows intense stimming behaviors (tapping, chewing on my mouth, cricketing my legs, rolling out my ankles, etc)

    • teachers describe as a bit odd or quirky

    • described as "too perfect"; followed known social rules rigidly, difficulty understanding when to break them

    • beginning of intense friend loss and inability to cope

    • didn't understand other's humor, though it was dump, started feeling extremely unlike my peers to the point of questioning my gender

    ~14yrs

    • s******l, diagnosed with SAD

    • diagnostic report shows stimming behaviors (use of fidgets, rocking side to side, listening to same song over and over

    • very elevated scores for social difficulties

    • "diagnosed" with rigid and perfectionistic thinking patterns

    • elevated scores for depression and anxiety; diagnosed with GAD

    • regularly losing friends without understanding why

    • difficulty understanding social purpose of hygiene & "girl rules"

    • start masking ~13 with "social rules" like counting to three before raising hand or the rule of three hang outs to understand other's interests in me

    • first questioning autism

    • first memories of flat affect

    ~15 yrs

    • first memories of being hyperverbal & info-dumping

    • strain on family relationship "for the way I speak"

    • therapist notices difficulty with social rules, understanding, eye contact, affect, says I'm "socially autistic"

    • probable burn out that looked like depression & anxiety

    Currently:

    • roomates say I still infodump at inappropriate times

    • can be rude; difficulty understanding how others are feeling

    • high difficulty understanding humor to the point of social breakdown

    • mom describes me as hyperverbal; roomates say I can go on and on

    • roomates describe me as "ditzy"

    • intense masking & camouflaging behaviors

    • bouts of s*****lity & burnout

    • PMDD

    • High black & white thinking, perfectionism, perseveration

    Lifelong:

    • stong sense of fairness & justice

    • strong sense of empathy

    • Extremely deep, constantly philosophizing

    • Dyslexia 

    • ADHD

    • Difficulty reading people, has gotten better over time but it feels like I'm putting from a database to solve a mystery 

    • Intense rumination and difficulty switching focus, must "solve the mystery" of the social occasion 

    • Researching social rules & psychology/sociology to understand socializing 

    • Bragging, oversharing, difficulty adjusting to context 

    • Difficulty understanding levels of friendship even with explicit rules

    • Tendency to yell without realizing it; tendency to speak like a little professor or an academic (think a milder girl sheldon cooper; but also upper middle class & gifted)

    • Probably PDA

  • Hey, no worries—your history sounds pretty classic for a lot of late-diagnosed folks, especially those who "masked" or flew under the radar early on. You're not wasting money; this is enough to bring to an assessment. Let me break it down.

    DSM-5 (the main guide clinicians use) says symptoms must be present in the early developmental period—think toddler/preschool years, not necessarily babyhood. But here's the key bit: they "may not become fully manifest until social demands exceed limited capacities." Meaning, stuff can simmer quietly until school, friends, or life ramps up. No need for obvious infant red flags—like poor eye contact or no babbling—if things kick in by age four.

    Your stuff?

    • Sensory seeking as infant (spoons obsession, looking/fascinating) → that's straight-up Criterion B: unusual sensory interests.
    • Late talking + crying over ideas + pragmatic issues by 4 → social communication deficits (Criterion A), literal style, SLP referral.
    • Food aversions, black-and-white thinking, perfectionism → repetitive patterns (B again).
    • Stimming, chewlery → motor/sensory stuff.
    • Struggling with friends, bossy rules in play, yelling at "wrong" ways → social rules and flexibility issues.

    The imaginative play and doll-personifying? Not a deal-breaker—many autistic kids do play pretend, especially if it's structured or solo. Bossiness often ties to needing control, not lack of empathy. Hyperempathy (feeling dolls' "pain")? That's common too—autistic folks can feel too much, just express it differently. Great eye contact and expressiveness? Some mask it well, or it's not a core deficit for everyone.

    Lots of adults get diagnosed with similar: subtle early quirks, then boom—toddler social/sensory hits. No infancy drama needed. Clinicians look at retrospective reports (your memories, family input), current traits, and how it impairs now. If you're struggling with overload, routines, or relationships, that's what counts.

    You're good—go for it. Assessments aren't "pass/fail"; they're about understanding yourself. If worried, jot down examples (like spoon fixation) and mention masking. Want help prepping questions for the assessor?