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

NAS39237

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.

  • in reply to ☕Tassimo ☕

    I do not think that speech delay is at all a requirement for diagnosis. Back in the day, 'high functioning autism' was differentiated from Asperger's on the sole grounds that the former had speech delay and the latter did not. If you accept the social model of disability, then the presentation of any traits as being disabling is entirely dependant on the environment that the individual experiences. As an only child with three doting adults, my grandmother lived with us, my life up to school age was not presenting me with any challenges that I could not cope with. I probably did exhibit quirks connected with my autism, but they would not have been particularly noticeable. This changed at four and a half years of age when I went to infant school, and in response to this more challenging environment I became selectively mute. I was entirely mute for 3 months and following this had shorter episodes of mutism throughout my infant school life.

  • in reply to Martin

    Can I just ask a general question about speech delays:

    I'm assuming that speech delay in this context means that the person was slow to learn to talk as a child?

    Is it also an autistic trait if someone is slow to formulate what they want to say?
    I have a really clear memory of taking a gymnastics class when I was 8 or 9.  We were all sitting in a group, and the teacher asked me a question.  It took me so long to formulate my reply that she asked me, 'Do you speak English?' and I said 'yes'.  The other children all laughed, and I didn't know why.  Is this an autistic thing?

    These days I tend to formulate what I'm going to say at a more 'normal' speed, but if someone stops me unexpectedly in the street and asks me for directions, it takes me quite a long time to get the words out.

Reply
  • in reply to Martin

    Can I just ask a general question about speech delays:

    I'm assuming that speech delay in this context means that the person was slow to learn to talk as a child?

    Is it also an autistic trait if someone is slow to formulate what they want to say?
    I have a really clear memory of taking a gymnastics class when I was 8 or 9.  We were all sitting in a group, and the teacher asked me a question.  It took me so long to formulate my reply that she asked me, 'Do you speak English?' and I said 'yes'.  The other children all laughed, and I didn't know why.  Is this an autistic thing?

    These days I tend to formulate what I'm going to say at a more 'normal' speed, but if someone stops me unexpectedly in the street and asks me for directions, it takes me quite a long time to get the words out.

Children
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