How long have you been waiting for an ASD?

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Hi everyone,

I just want to know how long you have been waiting for an Autism Spectrum Diagnosis (if you're not diagnosed yet), for those of you who were diagnosed in adulthood, how many years did you have to wait before you got your appointment?

I've been waiting now a year and 7 months, it will be 2 years in June, I'm getting sick of waiting to be honest, I'm 100% certain it's not Asperger's and it's actually an Nonverbal Learning Disorder that I have, everything of the symptoms for NVLD describes me perfectly, e.g. the brain damage at birth, left sided body weakness etc., most things for Asperger's I don't really do, i.e. stims, repetitive behaviours, special interest, over-sensitivity etc. I know that AS and NVLD can overlap so much that many people say they're the same condition, but that's bullsh*t as they're two different conditions, would the clinical psychologist pick up on whether I have NVLD or would she put it down as Asperger's, do you think?

I was diagnosed age 45. How long I waited for a diagnosis all depends on when you want to begin counting...

18 months: Counting from referral to an NHS (but local authority funded) specialist autism unit. I was one of the lucky ones - I got referred very soon after the unit was set up; I have heard since that they have such a backlog of cases that they are not taking new referrals.

5 years: Counting from the first of three ASD referrals. The first two were to go to a private clinic, as there was no NHS unit at that time. These were rejected simply because the private clinic had exceeded its arbitrary limit on taking NHS cases (their psychologist even wrote to my doctor suggesting that my case was suitable for their services, only to be rejected later by what my GP called their "funding committee"). The third referral was the one mentioned above.

20 years (roughly): Counting from the first time that a counsellor indicated that I probably had an unidentified condition which was making the counselling difficult. The next counsellor I saw a few years later also thought the same. In both cases, my GP decided to ignore their advice and didn't refer me for psychological assessment, and I lacked the confidence to challenge this.

Whether the distinction with NVLD will be recognised probably depends on the assessment team that you see. My assessment was very good - several hours split across multiple appointments, and all staff were autism specialists. They broke down my diagnostic report into different categories so that I had a better understanding of specific traits. But I've heard of other people being assessed in only a single appointment, and receiving a much less detailed diagnostic report. There seems to be a distinct lack of a standard diagnostic procedure.

From the first person I raised the possibility of having Aspergers was a psychiatrist back when I was like 22 or 23 years old. She agreed with me and I thought that was enough for a diagnosis. When I raised it years later with a family doctor he said nothing was written in my medical files about that and when I spoke with him he said I was HFA. I asked him for a referral to be formally assessed and he ignored me on a number of ocassions like he did pretty much all the time. I left that crap family doctor for another family doctor again asking to be referred he ignored me on a number of more ocassions. A psychiatrist I saw around the same time also ignored my request.

I eventually got fed up and used psychologytoday's website to find a local private autism clinic that specialized in assessing adults. I only had to wait a few weeks maybe. After that assessment it took another few weeks to recieve my diagnosis of Aspergers at age 29. This assessment cost me $660 out of pocket.

One year later I participated in an autism research study which included the most thorough autism assessment available and was given a diagnosis of ASD lvl 2 by a neuropsychiatrist. Since this assessment was part of a research study, it was completely free to me. They actually paid me about $160 in best buy gift cards to participate. The assessment was easily worth $3500 given the length of time and complexity involved.

I suppose I waited a long time from the first time I raised the issue to getting an official diagnosis mainly due to incompetent doctors, not specifically the wait time to see any given specialist.

I waited for about 15 months but know the waiting lists are just getting longer , it is even longer if you are a child.

I just read an article where people in NI use relatives Southern postcode as the waiting lists are shorter in the South.

I got my diagnosis in about 45 minutes on my first visit at age 37.

They spent time ruling out schizophrenia. I got prescribed Risperdal immediately.

I got my diagnosis at age 3. One only had to look at my behavior for a few minutes.

I first began to suspect ASD seriously just last year, back in August, I think. I immediately had access to an assessment through an autism specialist in my town, but my mom refused to let me request one. Instead, we saw a psychologist, who convinced my mom within 45 minutes that my problems were neurological and sent me to an occupational therapist. The OT, in turn, was eager to give me a general assessment (no autism mentioned on either side) to figure out where my symptoms stemmed from, and I've been waiting for that to be scheduled since October. The doctors have all been great; they're really eager to help. They actually called us to ask when they could set up the assessment a few weeks after my mom didn't call them back. But my mom's genuinely terrified that I'm going to be diagnosed with autism, so she's still putting it off further. I should be thankful, though. The doctors are great, and I haven't been waiting for nearly as long as some have. I'm hoping to have some kind of diagnosis by this spring.