What to do after a diagnosis is NOT confirmed after an assessment?

Hi,

I had my Autism assessment today after 3 years of waiting and the assessor believed my situation did not line up with the Autism Spectrum. His reasoning seemed to be that it is because I felt that it did not affect my life at an early age but certain debilitation have become more problematic in adulthood.  He mentioned the vague term of me having a personality disorder - more likely Anxiety. Yet, despite my obvious disappointment I don't know what to make of it - I've a list of Personality Disorders and common traits within them and nothing seems to jump out at a connection.

The problem is I feel that the debilitation I have are not just apparent when I am anxious. A lot of it is social based but even when I am with a friend I still cannot make eye contact among many other sensory and personality conflicts - I feel as if I simply don't qualify as an adult nor can handle any life skills expected as an adult.

I could go on further but the simple point is I am stuck, do I get another referral which I would have to pay for/cannot afford or look further into this vague term of personality disorder and go from there? I feel the debilitation getting worse, struggling to manage my work by the second. I was hoping to get through this get assistance but now I fee l am left  with nothing... & I don't know what to do...

Parents
  • Autism is a developmental condition and regardless of whether you had an idyllic childhood or a traumatic childhood there must have been some speech delay (or disorder), cognitive differences or sensory difficulties present throughout your childhood if you are autistic. 

    Speech delays (and speech disorders or communication difficulties of some form), or learning difficulties are hallmark signs of autism spectrum disorder. Those referred to formerly as 'High functioning' autistic children may be much more socially inclined compared to those with more severe autism, however, the same communication issue applies to all those on the autism spectrum. Autism doesn't appear suddenly at puberty. And as debilitating as anxiety is, it is a symptom of the difficulties that autistic people encounter in the environment, but it's not an autistic trait in itself. 

    There are studies that indicate that some autistic people cope better in adulthood, but I have not seen any research that suggests the opposite to be the case. It can happen that older generations are not identified in childhood, but even so, they/we do still all have difficulties in childhood—which are often put down to other conditions.

    If you don't feel that you were affected in your early life then it's difficult to see how you could be autistic. If your difficulties only began in adulthood then I would guess he is right and you should probably go for a mental health assessment as its more likely to be some other disorder that's emerged and needs to be addressed.

  • Not true. I had no speech delay. In fact, I was talking ‘like an adult’ before I was even at nursery school.

    OK, I haven’t been assessed yet, but the same was true for my daughter, she had no speech delay.

    Not everyone has sensory issues or meltdown, so how can one differentiate a childhood temper tantrum with a meltdown? Hindsight is a wonderful thing, and many of us cannot see what was true in the past without it.

Reply
  • Not true. I had no speech delay. In fact, I was talking ‘like an adult’ before I was even at nursery school.

    OK, I haven’t been assessed yet, but the same was true for my daughter, she had no speech delay.

    Not everyone has sensory issues or meltdown, so how can one differentiate a childhood temper tantrum with a meltdown? Hindsight is a wonderful thing, and many of us cannot see what was true in the past without it.

Children
  • I used to always cry at school when I'd done anything, even minor things, to receive criticism from the teacher. I think they thought I cried to try to get away with things, but even now as an adult any type of perceived criticism makes me really emotional. I just really struggle with it even when I try to rationalise the situation. It doesn't need to be being "told off", just anything I feel I've done wrong and it being picked up on and I'm an emotional mess. It is hard to explain to people who don't experience this themselves though. 

  • Me too on the no language delay. Can even be very advanced. Mine was. The process of aquisition was different though, lots of copying mouth movements, then talking to the animals on my wall paper rather than people.

    I'm sure you've perhaps come across the tell tail on tantrum /meltdown differential, but in case others haven't. A tantrum is to get something - all two year olds try it on. A meltdown has no motive, there is no gain. Poor little kiddie (adult even when you put me in situation where senses or anxiety is overwhelmed) just can't cope. Pure and simple. Nothing to gain except a whole lot of embarrassment. 

  • Forgive me. I should have written: speech disorders and not speech delays, or maybe communication difficulties.

  • Social communication challenges yes, to some degree, but we were talking about speech delays.

    Most women/girls will often try more where socialisation is concerned. Not because we are social beings, but because we feel the need to do what everyone else is doing outwardly.

    I think we are all aware of the requirements of a diagnosis.

  • All children with autism spectrum disorder face social communication challenges, though how these manifest varies. High functioning autistic children may well be much more socially inclined, more communicative and some may even be advanced communicators beyond their age. I was one of these children. Yet even though I had a huge active vocabulary, and could read text way beyond my reading age, I still had dysarthria at various times during childhood and adolescence. I still have intermittent stuttering as an adult. 

    Rightly or wrongly, the DSM sates that for a diagnosis of autism, communication difficulties must have been present from early childhood.