ASD diagnosis

[bionicley]

My son(5)has been diagnosed with an ASD a couple of months ago. He was very slow to talk but since starting school has made much progress. I have been attending the Early Bird Plus programme but feel that it could all have been covered in one session and that not much of it is relevant to my son. The whole idea of the spectrum is so vague.
Can anybody suggest any good books that might give me a little more insight? Over the years we have become aware that this son is 'different' and we have developed coping and helping strategies. His school is fantastic and sensitive to his needs.
His main problems are with language and social interaction.
I'd really appreciate any ideas. Feeling confused and a little lost.

Hi bionicley. We have just had the official diagnosis of ASD for ds(3) today, I think it is what we have been expecting for a while (i was aware he was different even as a baby) but hearing it in words has been a bit of a shock. The doc gave us an official type booklet called "Information for parents - Autistic spectrum disorders adn related conditions" which has answered some questions and also has lists of further reading and websites...

But I guess we are in the same boat as you, just feeling a bit confused adn worried about what the future holds

Hi Bionicley
I have a DS aged 10 who has an ASD. You could try the National Autistic Society website. They have lots of info on there, including a section for people who have just received a diagnosis. They also run a helpline. They also have a list of books and articles that are available to buy/download.
HTH!!

Hi Bionicley and catty as well.

I ahve 3 kids, 2 of whom are on the spectrum (one HFA, one ASD).

The books I wouls suggest to start are Autism for Dummies (Americanised but very comprehesive)link here his book which is co-written by Tony Attwood who has fantastic rep, and also this as it may be intended for Asperger, but has a lot of useful practical ideas thata re transferable across the spectrum.

Do remember that although I have linked to amazon for ease, your local library can usually order boks in for about a pound.

I would agree that the NAS is very useful indeed, they ahev helped us a lot and have an excellent helpline, as well as a very good educational line (often overlooked). Their information helped greatly with ds1, as it was hard to get him a dx.

there si help out there but much of it is formative and / or patirent specific. The key si getting to know what is right for your child, which is the hard bit. And what is right for you as aprent, of course.

For example Gess on here uses a very specialised range of therapies that she can work with and I can onlya dmire her for her dedication, i couldn't manage it myself so I follow the therapy intervention plan run by BIBIC with both boys, which is easier for me and I ahve been able to get funding through BIBIC to cover it (they ahev a website). Gess and I (and other) do overlap of course, and we both follow similar nutritional therapy intervention (we use a caseina nd gluten free diet, which in recent research was shown to have a successful aprental rating of 5:1 in favour).

My personal advice I suppose ios to join the NAS, get the sutism for dummies book (as it covers popular interventions such as TEACCH, and ABA) and also e-mail BIBIC as they do a free discussion interview over the phone, see what you feel in your heart will work for you. but the most important thing is to care for yourselves too- its a long journey and diagnosis can be an extremely ahrd time, like a bereavement. Put yourselves at the top of your care list, as your kids need you to be OK.

I;m going to be cheeky in a minute and link you to a survey I am doing on ASD parents and support for a Uni project, please feel completely free to ignore if you want! I'm just trying my luck a bit .

If there's any other info I can give you, if you want a ref for the Casein / gluten research mentioned above, or need a chat do feel free to CAT me.

best wishes X

You will learn a lot on here

For Uni I am doing a proposal on starting a chairty providing

support (mentoring support) to aprents in the first year after
dx.
I need to show I have spoken / obtained views from other parents
so
if you could fill in and either post of send to me privately on
peachesandcream04@bt internet dot com I would appreciate it.

Cheers (Peachy)

PS all anonymous of course!

1. Do you have (or care for) a child on the Autistic Spectrum?
   If
   so, how many diagnosed children do you care for?

2. What year did you obtain the diagnosis? (if you have more
   than
   one child, first diagnosis please)

3. Who gave you the diagnosis?

4. Were you aware of the likelihood of a diagnosis?

5. Looking back, were you given details of places you could turn
   to
   fro support at this time?

6. If yes to question 5, did you access these resources?

7. Did you feel you had a sufficient support network already
   established (e.g. family / friends)?

8. Had you been offered access to a Mentor (a volunteer with
   training and also a child with ASD themselves) to support you
   through the first year would you have accepted that offer? Can
   you
   explain why you would reach that decision?

9. What would you see as the role of a Mentor in this situation?

10. If you would not want a mentor on an ongoing basis, do you
    believe you would have benefited from someone to call on when
    needed-
    e.g. if there were school problems, with regards to benefits
    claims, in times of stress?

11. If you were going to advertise for a Mentor yourself, what
    sort
    or person would you be looking for?.

Is there anything else you would like to say to those determining what support ASD famillies receive? (As the woman running the MA in ASD at the Uni will probably get to see this, as will the NAS)