Early life info - no informants

For a system that's intended to diagnose people who can't socialise very well, it's always struck me that asking for information from people who "know you well" seems somewhat of an oxymoron.  I mean, if there were plenty of people who know you well enough to provide references like this, it suggests that social interaction isn't such a problem for you.  Put another way, it seems like a very fixed and inflexible way to diagnose a very "mobile" spectrum disorder.

Congratulations! That’s wonderful news and thank you for letting us know the outcome. 

TheCatWoman ArchaeC Roy Alien0n3arth Martin  Bunny Stuart333 Thank you all! I had my assessment last week and was diagnosed. The assessor was really lovely and made the assessment very comfortable. There were a few questions about my childhood that I couldn't answer but it didn't matter :-)

I find your post very helpful. I have a good memory and I recall many things even from my early childhood I also recall what my family members told me about me as a baby and toddler. My mom told me for example, that as a baby I didn't like being touched and hugged, and I cried if taken on arms. I also had some developmental irregularities (started speaking at 3, suddenly with full sentences properly, also kept walking in circles holding furniture, was afraid to walk by myself for quite long time. But tge problem is that the records are long gone and I have no solid proof that hese issues occurred. Problems with sensory,  communication and friendships are for me persistent my whole life and it was never better than it is, no matter how hard I tried. Also special interest, my obsessions with trams etc- i have some proof of that on my old photos. School reports dont say much.

In my case it was recognised that an adult may not have someone who knew them well as a child. The assessment allows for that and at no stage was I asked to make out a list or provide a written record of my childhood. 

Perhaps some private assessors haven’t been fully trained in adult autism assessment.  The NHS in Northern Ireland and many private assessors, including my private assessor, have clarified that not having a person who knew you in childhood is not a barrier to an adult diagnosis. 

This seems to be a recurring problem as therre have been a few treads like this one over the last few months.

I think there need to be a recognition that when diagnosing adults there may well be no one who remembers or can be trusted to remember and that things like school reports can get lost during decades of house moves etc.

I was diagnosed seven months ago and I felt very concerned about not having a person who knew me well as a child.

I began recording information as I remembered it over the weeks before assessment: Difficulties at school, relationship issues, mental counting and arithmetic, preferences of daily activities and hobbies, plus the times spent on two particular interests that preoccupied me for much of childhood. I didn’t record everything I remembered, just memories of my likes, dislikes and difficulties in childhood. I didn’t bring the notes to the appointments. 

AnnieBo said:

Should i just send the lot of point out bits (although i don't know what is relevant!)

I didn’t have to send anything to the autism clinic so I can’t comment on that. My GP had already made a referral which included details of my difficulties with social communication and interaction in multiple contexts, and my repetitive behaviours. 

The clinical psychologist who interviewed me at the first two appointments asked very straightforward and targeted questions which I could easily answer with a factual response, eg, place of birth, type of birth (forceps, mother was anaesthetised), names of schools attended, parents occupation, where I grew up and other such questions requiring facts.  Further questions required a yes, no or I don’t know answer, followed by an example or examples, eg, questions about hobbies, relationships, repetitive behaviours, school work, sleep, food preferences, sensory issues.

Even though I couldn’t remember or didn’t know the answer to some questions about my early life, the psychologist indicated that I had already shown him enough to indicate an autism diagnosis was likely and this was on the basis of my communication difficulties and repetitive behaviours, although my preoccupation with specific long term interests and other things had been noted. I was relieved and realised I had worried needlessly about not remembering potential key things.

The speech and language therapist who completed the next parts of the assessment was concerned mainly with my adult life so I didn’t need to prepare anything. 

In hindsight, as is the case for many of us autists, I realise I had got stressed needlessly over potential information gaps.

The assessors should understand that you won’t remember everything from your early life and their questions and observations are designed to draw out the key information required. Good luck with the assessment. 

Fine, I'm not going to argue.

The forum should be for expressing personal opinions and experiences, so that a range of views are available.

I thought we were just talking about the informant stage. There should be an opportunity to cover other items too..

Writing a lot of information is time consuming, emotional and stressful. If you wanted to reduce the burden and pressure then you may not need everything.

If you read it otherwise, then I apologise.

Thank you Bunny - I have sent my GP surgery searching for my paper records so hopefully I'll get to see them in time :-)

I will keep this in mind - thank you so much for sharing :-)

this is lovely to read. I think I've compiled more than enough evidence to prop up the very short leg of the coffee table (packaged up and sent by recorded delivery!). I'm sure its mostly irrelevant! They'll soon learn that just "being me" will involve a vast amount of irrelevant waffling!!!

Hi, I had my assessment recently with no input from an informant. I prepared nothing on paper, I did rehearse what I thought they might ask me, more times than I can remember.

I have all my school reports, all are normal, just one had a comment of “a little bit quiet.” I didn’t bother taking them with me. 
The assessors were very interested in my parents, it soon became obvious that both my parents are likely to be autistic.

I have a good memory of my childhood and was able to answer their questions. I learned to walk and talk within the normal time frames. They are interested in how you generally act during the assessment, they are interested in you, not essays on your life. They were interested in wether I played with other children as a child, do I have friends in adult life and my relationship with sensory issues, food, touch, smell and sound. 
Good assessors will make you feel more like it’s a friendly chat, some tests are designed to see if you stress over them or how you interpret them. In feedback at the end it was mentioned that I stim quite a lot when anxious. I hadn’t noticed it. So my advice is to just be you.

Stuart333 said:

Autism is defined by ‘core characteristics’. These are described in medical literature as: 

I'm fully familiar with both the nature of AnnieBo's question, and with the characteristics of, and diagnostic criteria for, autism - to the point of having a qualification in the subject.

My point was that, in falsely claiming that "They are mostly interested in social interactions and communication", your earlier reply was highly misleading and could have caused them - and others, who read this thread over time - to exclude, or reduce or minimise their focus on, the other equally important criteria (during childhood and beyond) during their preparation for their assessment.

It is also important, when offering advice to others, for us not to assume that their experience will be the same as ours. For example, you say:

Stuart333 said:

However, in my case they had decided I was likely to have ASD before the formal assessment even started and before looking at any of my submitted info. Clearly it is largely influenced by how you come across, hence my psychologist saying there was no need to prepare tons of info, the additional items are to complete the picture. So I  would not get too hung up.

In my view, advising people not to "get too hung up" on providing plenty of supporting evidence is not at all helpful. Their situation might not be the same as yours. And, for many, this may be their only chance to be assessed. So, in my opinion, it is well worth making the effort to prepare as much available evidence as they might have.

Stuart333 said:

Note also that you don't need 10 examples of a point, once you've ticked that box they moved on. This is where some people online have been surprised not all their info was used.

For example, if someone does have 10 examples of any given point, then I'd strongly suggest submitting them or noting them down for reference. If we have more, but instead only submit one or two examples for any given trait / behaviour / issue, then we cannot know whether our submitted choices will meet the assessor's requirements as supporting evidence. For an assessor, It's also not just a matter of "ticking boxes" to reach a simple yes or no for a diagnosis of autism. Their level of understanding of our difficulties also informs their view of our support needs.

I hope we can now move on.

From the NAS page:

Autism is defined by ‘core characteristics’. These are described in medical literature as: 

• social communication and social interaction differences 
• restricted and repetitive behaviours and interests (RRBIs) – including potential sensory differences.

The post was about absence of an informant related to childhood.

In order to get a diagnosis I believe you should demonstrate the above, ideally now and in the past, to show it is a developmental issue not as a consequence of something else. This was the primary focus of the questions and info that I and my informant were asked, related to childhood experiences. I believe you also need these to have had some impact on your life.

The NICE clinical guidelines can be found online, which I read, which may be helpful They encouraged me to think about the items that would be key, but I did not try to skew or misrepresent anything.

However, in my case they had decided I was likely to have ASD before the formal assessment even started and before looking at any of my submitted info. Clearly it is largely influenced by how you come across, hence my psychologist saying there was no need to prepare tons of info, the additional items are to complete the picture. So I  would not get too hung up.

I did note other items that would be of interest, but without communication and interaction differences across time it would be harder to meet the criteria. So having these will be helpful.

There is a caveat to this, related more to girls than boys, based on compensation, which is where the CAT-Q comes in. But this is where an assessor that is experienced in the presentation in women and girls is helpful.

Note also that you don't need 10 examples of a point, once you've ticked that box they moved on. This is where some people online have been surprised not all their info was used.

In any case, it will do any harm to think of everything, but it takes a lot of time and effort and may not be needed.  For example I remembered the elm trees being cut down in 1975, seeing stag beetles in 1976, that there was a sweet shop with loose sweets in jars and 1p or 2p could get a bag, that I saw some kid get run over and just lie in the road, I knocked my front tooth out, but none of it is relevant. It's your interests.and behaviours, if you can remember them, and interactions.

I think the major indicator for me was the three months of selective mutism following starting school at four and a half years of age. I also mentioned that if I was asked questions by adults I did not know well, my mother would usually have to answer for me, or coax me into saying something. Also that I did things like keep packaging for toys and replace toys in their packaging after playing with them. That I would not call round to other children's houses, they would have to call on me to play. How I was obsessed with ponds and hunting out grass snakes, frogs, newts and water insects.

Lots of quite minor things can add up to create a picture of childhood.

In addition to sharing my own memories and extracts from some of my school reports with my assessors, something that helped me enormously in preparing for that aspect of my assessment (covering my early developmental period and childhood) was getting a copy of my full medical records from my GP - including photocopies of my archived paper records.

This helped in two ways. Firstly, it prompted me to remember various relevant things that I'd forgotten (my memory is generally very poor, especially going so far back). Secondly, it provided solid evidence from various stages of my childhood. For example, there were notes about my sensory sensitivities having proved problematic for doctors when they were trying to carry out physical examinations.

Perhaps that’s something you could also consider doing, if you think it might help to surface some of your own memories and/or be useful as direct, supporting evidence.

Stuart333 said:

They are mostly interested in social interactions and communication.

Without meaning any disrespect to Stuart, I feel it’s importance to clarify that they’re not “mostly interested” in those aspects.

They’re equally interested in the other criteria, which are explained here - these resources should also be helpful in explaining what kinds of things it might be useful for you to highlight:

NAS - Criteria and tools used in an autism assessment

NAS - Signs that a child or adult may be autistic

They are mostly interested in social interactions and communication.

Did you play with other kids on and outside school, have friends, keep friends, fit in, play games, initiate conversations, know when to speak, initiate group activities or just follow, spend time alone, get bullied, talk a lot, only talk about your interests, were creative, happy, withdrawn, get into trouble or always good, have repetitive behaviours, struggle with transitions between schools.

You can note if you were especially good at something.

They may also be interested in any health issues you had and anything you found traumatic or distressing. Also any particularly good memories.

Having reports that just said you did well and do not highlight much are ok, mine said that.

There are no right or wrong answers.  It is to build a picture of you over time.