Just Diagnosed

Hi my 4 (nearly 5) year old son was diagnosed as having 'autistic spectrum disorder' on Wednesday. I am launching myself into trying to digest all the information out there while trying to figure out the next step. Any advice/direction appreciated.

  • Look at the 50 questions aspergers test and identify the behavioural patterns the child is demonstrating. I am 52 nearly and I am still coming to terms with my real self. I self diagnosed last year and I am waiting for an assessment but don't need one to know who or what I am.  I am married with two adult children and a daughter like myself. There is much thinking of helping children adapt to real life or be normal. Autistic people are by definition not the way you want them to be. Nor are they naturally able to be so. We fit in by mastering behaviour patterns that we observe to fit in. This is not always successful. We have less self control than everyone else. Nothing changes that truth. So my advice is take the time to get to know who the real person is. Do not expect you child to be normal. Do not expect understanding from professionals. Do not expect understanding from your social group or society. Live your life by appreciating the value and integrity of the person that is your different child. Help your child recognise their difference as early as possible. Mentor them into accepting their difference and what it is. A very strong personal identity is the best foundation. You are there to confirm and celebrate it. You are there to help them deal with real life. Explain to them what other children and teachers expect. Explain as many times as you have to about being different. I read the book by Gillian Drew about Autism as an adult. wow. wish I knew this stuff when I was growing up. Your child will react/behave and think differently. Come to terms with that and start to celebrate and foster the good differences. Help them to exercise as much self control as they are able to by asking them why they are doing something. So learning responsibility as early as possible. Help them to learn at their pace. Your patience will be tested to the max. Films like the accountant help. Accept their differences as early as possible and mould them slowly and gradually into being able to fit in when and how at their pace. Be open and honest with everyone about your situation. Regards.Daniel.

  • Hi Tim1,

    Just wanted to add on to Tom's post with a link to our 'After Diagnosis' page here on the site - http://www.autism.org.uk/about/diagnosis/children/recently-diagnosed.aspx -  which contains information about managing home life, education, how to approach talking to your child about their diagnosis, benefits and financial assistance, and what support is available both for you and your son.

    Alternatively if you would like to talk to someone directly, our Autism Helpline is available on 0808 800 4104.

    Best wishes,

    Ross - mod

  • Thanks I will check them out!

  • Glad you have a new pack coming. Do you know you can download a DLA form instead of waiting for one through post? If i find anything useful of course I will pass it on. :)

  • Hi Tim,

    Check out the family information on this site:

    Family Life

    Also, the Autism Services Directory can show you what's available in your area for support, etc:

    Autism Services Directory

    Finally, I can recommend a book that you might find interesting.  One mother's account of bringing up an autistic child, focusing on the rewards:

    Making Peace With Autism

    You can find cheaper copies elsewhere, probably.

    All the best,

    Tom

  • He is very "sensory" even the light at the top of my landing he throws things at as he doesn't like it.x I hope as we are at the same stage. Perhaps if you do get good information you will pass it on?? :) As I will for you.x

  • I managed to get through and they have promised me a new pack! Should hopefully get it next week! I also have a form being sent for DLA Disability Living Allowance. This may help to replace items he has broken. (doors / wardrobe / bed!!) :) 

  • Hi! That's not a good start, My pack contained some local info leaflets and advised to visit this site!

  • Hi I am in the same boat my son has just been diagnosed. The information pack I received with my meeting with the lady as St Helen's council all the information pages were pretty much blank as the ink had run out on the printer!!. I have left 3 messages but not received any call back!!