Input please: What to do whilst waiting for your autism diagnosis?

Creating a little guide for those who are waiting. Please contribute the little hacks that you have done to keep busy or sane during the waiting process. Thanks in advance.

What to do whilst waiting for your autism diagnosis.

Now that you have asked your doctor and they have put your forward for a diagnosis. The diagnosis can be 10 months or more. In this time you may get a further pre-assessment. Perhaps they will send an AQ10. Later they may ask you to come in and then you should get a diagnosis. Which you can disagree with.

The government and autism activists have moved heaven and hell to safeguard people with autism. And you will welcome this when it comes. But what about before?

There is legislation which helps suspected people without an autism diagnosis but this is hard to come by. I have written this guide to help me and those currently waiting for diagnosis and having a hard time. Funny because they have difficulties like autism but have not a diagnosis.

Bookmark share. Add comments if something needs changing or being updated.

This guide does not include convincing your doctor, the fabulous autism.org should be your home page. Just a valuable prompt to get help whilst you wait.

  1. The CAB is your friend go there, call them up, or write to them for help, and get more help.. And more help. Ask what to do next. And if you forget go back. If you can't write fast enough, ask them to write it down. Double check the information with sources.
    1. You will need several areas. Research, Call log, Projects, Tasks, Monkey mind, Law, todo
  2. Go to the stationers, Buy a large diary (or blank notebook and make your own), an a4 note pad and some erasable pens. Start writing, about your feelings and difficulties and note what you are doing to overcome them. E.g. Prompting yourself, by leaving reminders, if others are reminding you is fine. Buy a folder and keep all the paperwork in it.
  3. Get your finances in order. The CAB will ask you about how you are coping. Saying good, or okay or fine is not acceptable if you are describing looking down the back of the sofa for lunch money. It is better to seek help to maintain your living than scrabble at the last hour. The income-related benefits are often called gateway or passport benefits that enable you to get help with legal aid. The following are benefits are legally available for those that qualify;
    1. Housing benefit
    2. JSA, ESA (sick and working)
    3. Working tax credits with disability (sick and working)
    4. Universal credit.
    5. PIP - send of for the forms. there is PIP instruction here https://www.autism.org.uk/about/benefits-care/benefits/pip.aspx and the templated letter here template letter
  4. Get on the ‘tinternet and read up on autism and the comorbid (related) disorders. You may find information here Www.nice.org.uk These are
    1. OCD
    2. Social Anxiety
    3. Dyslexia
    4. Dyspraxia
    5. ADHD
    6. Pathological Demand Avoidance - you need to but won't (server procrastination)
    7. BPD.
    8. Depression
    9. PTSD
    10. autism https://www.nice.org.uk/guidance/cg142
  5. Ask your doctor for other tests above if you feel you are displaying those signs. The reading and forum and dairy will help you figure out what's up, and develop a better vocabulary to say what is wrong and what help you need and what help is legally available to you. this will help you figure out stuff you did that you thought was eh.. Neurotypical (NT/Normal). No being forgetful is not a family trait, nor is having more than 47 browser tabs open.
  6. Join an autism group and contribute and ask questions. Peer support is important. Depending on your persuasion, face to face, online, phone support, email support or other happenings are a great way to feel supported and not so lonely. You may even think of becoming an activist.
  7. Follow up with your doctors, hospital autism processing centre, the assessment centre weekly, or until they tell you when it is. Add to your call log.
  8. Ask the council for a care assessment and call them weekly. Add to your call log.
  9. When you get your assessment date, ask for the process that they will use to asses you.
  10. Become more vocal with all the above services, especially your GP, about how you are feeling. It may of seem that people have been ignoring you in the past. This fits with Autism. Autistics have a deficit in social communication, social interaction and social imagination. But this doesn’t stop you trying and does not disprove social anxiety. Try to pick up the language that professionals listen to. Reading blogs will help, for example, frustrated, depressed, anxious.
  11. Make plans for the future of stuff you want to do things that will support your “well being”
Parents Reply
  • - I have a lifelong undiagnosed condition and am awaiting clarity on what it is, understanding more about how it affects me and the impact of it on how I function.  I am sorry if it looks too law focussed but with the logical/methodical approach I have then that is how I come across.

    With Employment, the Damagers/Muppets do not listen because they know best BUT are only focussed on their WANTS and not my NEEDS (as defined by Company Procedures/etc).

    I actually have three disabilities/impairments but I do not view it as that and to everyone I am "normal" albeit eccentric.  Now whether my mental condition is Autism or Aspergers (High Functioning Autism) then that needs full diagnosis by qualified/experienced people.  People with Autism/Aspergers can also have other conditions of the mind too (ADHD, OCD, Dyslexia, etc) which can become prevalent via Meltdowns/other Mental Conditions (Anxiety Disorder, etc).

    I have functioned normally, excelled at everything I can do and since the bullying manager came on the picture I have gone literally through the floor towards the opposite side of the world.  His focus is Directing/Dictating and non-negotiable and I was the train wreck - never asked how I was feeling, how could things be changed/improved.  The only break I could have was to get signed off by my GP and even then Work seem to think company wants/needs are what I need.

    I agree with you that the wait is too long but the NHS has too many chiefs/bean counters/ and not enough braves.  Until Mental Health awareness reaches the visibility of PRIDE then it remains catch up.

    My fixation is on what I know is the truth and logically right.  When I know I am right then nothing can change my mind - do not tell me anything contradictory/ambiguous, do not tell me I have to change, it is all my wrong perceptions and in my head.  

    To quote myself (stuck record):-

    With my IT hat on, wouldn't it be nice to have this somewhere with easy access in small bite-sized chunks not buried in a page of words/lost down the forum articles.

    Most of the internet is focussed on the Neuro Typical and to me it is simply TOO MUCH INFORMATION so why not have these simple "Post-it Notes" on/as pages with links to help us understand these bite-sized chunks?

Children