Advice needed on draft diagnostic report

Hi there, good to hear from you too James,

I am feeling a lot better about my report now. It arrived at a difficult moment and reading it was probably always going to be a bit tricky. I have been reminding myself of all the amazing things I have experienced in my life as a result of being autistic. 

Sorry to hear you are still waiting for your report to arrive. Seven weeks is a long time to wait. The long delay made me think there must be a lot to it, but there isn't really. Funnily enough one of the autistic traits pointed out to me was difficulty getting started on a task. People doing ASD assessments clearly have a problem with this too! 

I noticed one of the clinics I looked up for my son promises to deliver the report within two weeks of the assessment - I can see why they make a big point of saying that now. Hope yours comes soon. You are quite right, our reports are very likely to be misinterpreted by people who do not understand autism. I shall only be sharing carefully selected information. 

To be honest I am quite inclined to abandon the idea of trying to get any changes made where I currently work. It's two years since I started so it's the point at which I typically get fed up and leave. I am more inclined to branch out in a new direction. A fresh start is really appealing as I can get things put in place from the start. The service I work for is bound to be cut back further in the next round of austerity - job security is an illusion these days. 

You are right about all the phoning around increasing anxiety - I had to take Propanalol this morning before speaking to the Union rep. Nothing is properly joined up - everyone seems confused about what is going on. The xmas break has made things much worse. If autistic people were in charge I am sure everything would run a lot more smoothly! 

Take care,

Best wishes.

Look at what from the report that you want an employer to know. Get your GP to write a letter with just those details. There is no need for your medical records to end up in HR. 

I'm a little bit late seeing this post and putting my sixpence worth in, but I will share some of my thoughts with you.

First, you seem to think it would be improper to make suggestions as to what you would like in the report.  The psychologist who diagnosed me made it very clear that the person who knows best how things affect me was me myself.  He was more than willing to add things to the report using my suggestions and clarify things so there was no misunderstanding.  So I would suggest that you tell your psychologist/psychiatrist of your problems at work and ask for a small appendix to help explain your problems in the workplace and any suggestions to alleviate these. I don't see anything wrong with you making a draft of this yourself and sending as an example of what you would like to see.  I am sure that there would be something positive come from doing this.

I think a lot of us 'play down' our so-called inadequacies, and our need for help.  We look on ourselves as 'normal' (I know I do) and do not want to be put in the spotlight as needing special treatment.  And this is all to the good in some cases.

However, from my experience, I know there is a bit of a raging monster somewhere inside me that is waiting to get out and show itself at certain times, and when it does I have little or no control over it.  There is also a very meek individual inside, who wants to hide away from the world at other times, who wants to be left alone to do things he knows best how to do.  And I do know a lot of time the circumstances that will trigger these different persona and the way to help prevent their manifestations what has to be done, what adjustments should be made.

My psychologist included several appendices, one of which was what he considered to be workplace practices which antagonised my autism and the adjustments which could be made to help me.  Besides anything else, this helped me considerably in my visit to Occupational Health, who on two previous occasions (pre diagnosis) had taken little notice of the fact I was suffering from extreme stress, anxiety and depression because of my workplace practices.  And immediately I informed my employer of my diagnosis (before I had the report) I was referred to Occupational Health which I managed to defer until I had received the appendix to the report.  The way Occupational Health then behaved was totally different, saying I was disabled under the Equality Act and suggesting that all the adjustments recommended by the psychologist were implemented.  (I should add that two years later I only had the final one of the adjustments put in place and I am now so much happier at work.)  Remember that failure to implement reasonable adjustments is against the Equality Act, and is grounds for a grievance and can also act as evidence in an Employment Tribunal should the need arise.

Part of the spiel in the Appendix was that I should be involved in meaningful consultation in any changes needed to my work, and my views should be considered seriously. 

Sunflower said:

My main difficulties at work have been changes to timetables and office accommodation, resulting in increased workload, limited access to information, and nowhere quiet to retreat to at break times. There was huge uncertainty over the changes being introduced and the impact they would have. 

This was one of my problems at work as well.  It was not only the changes, but the lack of control I had, things being put into place that I was not even asked about how I would feel about them.  A reasonable adjustment should be to give you frequent breaks and the permission to retreat somewhere quiet for short periods to prevent stress.

Sunflower said:

A better way of approaching this may be via an Access to Woek assessment which I applied for today.

I could not speak too highly of my experience with Access to Work.  They suggested adjustments, funded a support worker for two sessions a month (one with my manager and one as a general chat about not just work but anything and everything else as a means of helping my well-being) and funded some training for the managers and work colleagues about autism and how it affected me.  I must add though that the managers did not take what they said seriously and once again this would help in a grievance and ultimately in a case to an Employment Tribunal.  Do not forget that the purpose of Access to Work is to keep you in your job, and their suggestions are invariably upheld in cases at an Employment Tribunal.

There should be consideration given by your employer to adjusting your working day, including your preferred arrangements for lunch breaks at a meeting - this is not a big thing to organise and it is part of autism that a structured day helps prevent problems.

Sunflower said:

'The Union want me to submit a grievance but I don't feel I have the energy to do this currently. I think I might have to ultimately as without a formal complaint nothing is being done to resolve matters.

My expectation is that if I do complain I will probably end up having to leave. I am not sure that my manager would be open to mediation - funny isn't it as we are supposed to be the ones who lack insight and are inflexible! '

Unfortunately, grinding someone down is all part of many a manager's or company's method of preventing trouble.  And employment laws unfortunately often favour the employer.  But remember there are probably time limits for grievances in your firms grievance procedure but these could be relaxed.  The only other sanction you would have is via the Employment Tribunal which is a very long process with strict time limits for applying and can be a very stressful period with the employer in the meantime.  So that is something that should be avoided if possible, although I ended up going down that route ... and I may add that it eventually did sort everything out and I kept my job, something I felt at many points along the route would not happen.

If you feel that your manager is not giving you adjustments, send an email asking if they consider you to be disabled as under the Equality Act and if not why not.  Their reply could be the one thing that incriminates them!  Keep all emails and even keep a diary of problems and the thoughts you have (if you do this electronically do it in the form of an email to yourself which you keep adding to, that way the dates will automatically be added and it could be used in evidence at a grievance.)

I do hope everything works out for you and in a far smaller timescale than for me.  Good luck.

Your employer may demand to see a copy to prove your diagnosis - just give them a copy of that page with anything they don't need to see blanked out.

Mine had lots of private information that i didn't want them to see - photocopy the page, black out anything sensitive and then photocopy again so they can't see through.

They can like it or lump it - they have no further right to your medical history.

Hi Sunflower its great to hear from you, I hope you are OK

I'm still waiting for my report. I was told it would take 2-4 weeks. Its been over 7 and still no sign. I started chasing it a few days ago, They don't seem to answer the phone, Ive left a couple of messages on the answer machine but no one has got back to me yet. I seem to have spent the last 6 months chasing various NHS departments and waiting around for calls that never materialise. It has had its toll on me and has made my anxiety issues a whole lot worse.

I got a letter stating that I had Aspergers/high functioning autism and I gave a copy to my employer. My employer has then been able to liase with Occupational Health regarding adjustments

When my full report turns up I wont to giving my employer a copy, I intend to keep it private. I don't see any benefit in sharing it with anyone without a high level of expertise in this field, they just wont understand

James

I got two reports: a full and very detailed one, which contained more personal stuff and the details of how/why I met the ADOS/ICD criteria for diagnosis, and a "summary report" which is designed to be shared with employers and the like.

The summary states the diagnosis, then explains what that means and how it may affect me (for example, communication deficits, processing style etc). It also contains recommendations for adjustments at work as a bullet-point list of "XXXXX would benefit from ....." It doesn't just focus on perceived deficits, but is balanced out with things that I do well with precisely because of my Aspergers. I would be OK with showing the summary to the folks at my current workplace, but they are already very accommodating so I haven't needed to. I do understand the reticence though if the people you work with are not nice, and possibly conniving and manipulative. I wouldn't give people like that any ammunition either, and I can fully see how they could use the knowledge against you if they were that way inclined.

I think that creating your own summary containing the information that you are willing to share is probably the best way to go.

I redacted all of the personal information from my report-  bluntly, most of it was none of their business. What I gave them was basically, a 'this man has Aspergers' statement and all the specifics about reasonable adjustments were discussed with me rather than them blundering off and implementing things that were of no use to me.

Yes, I would need to feel very safe about disclosing personal information to employers and, in the absence of that, I would pare it right down to very brief, factual information that is targeted towards the results you'd like to see.  E.g. if you'd like a coach then maybe a brief outline about how this would help you and, in turn, the organisation too.  

I guess the bottom line is that I don't feel very safe with employers though.  To my mind the employer - employee relationship generally suffers from a huge power imbalance and I wouldn't trust them not to misuse their power.  This also means that i'd be very guarded against giving them (or their henchmen in HR) anything which could later be used as ammunition against me.  

The autism team told me that they used to do a 25 page report which basically went through all the elements of the assessment and described the findings.  They then said that this had been discontinued as most people said it contained too much information and was overwhelming rather than helpful.  My response was that I EAT information and would have preferred to have the report anyway. 

What I received was a very brief letter and a statement that, "Yes, we will be making an ASD diagnosis today.  Any questions?"

My first question had been, "Where's my in depth report?"

I could still certainly do with some bullet points but, after all of the delays and to-ing and fro-ing with the assessment process I just tired of getting, "Oh, we don't do that" type answers.  

I feel quite sad about the negative statements you received though.  I wonder whether the whole diagnostic process with it's focus on deficits and meeting rather basic diagnostic criteria is just designed to elicit stuff like this.  Certainly when I've been providing information for my son's ongoing assessment I've felt steered towards negatives and have made a point of telling him that there are lots of positives that I think are almost deliberately excluded from this kind of assessment.  

Maybe I'm better off without this kind of report.  It sounds a bit like the school report from hell.  :(  

You are right to be guarded and not to be trustful Jenny. I am going to try and adopt the same policy from now on. 

To be honest Jenny I don't think the report is all that helpful. It goes into great detail about the ADOS but apart from that there are just brief statements that sometimes rankle. It's hard to sum up 58 years of life in a couple of sides of A4 without skimming over things.

The initial email I got with some bullet points was probably more useful. Think I may be misunderstanding the purpose of the report. It is probably just intended to summarise the assessment process, not go into what needs to happen next.

I have not discovered anything new, apart from some negative statements about me made by my parents. I have always felt rather excluded and unloved - sadly it seems I was right to feel this way. I am going to have to try and forget what they said in order to continue to communicate with them. 

If I had received one, however, I would treat it as being for my eyes only and probably ask for a summary for the OT department at work IF I felt that certain things being on the record might be helpful.  Then possibly use my next appraisal if there were any specific strengths, challenges or accommodations I felt I needed to discuss.

My approach is very guarded though and I'm not very trustful of most employers.

Diagnostic report?  I was supposed to receive a diagnostic report?  :(