Just been told my 3yr old has moderate ASD!

(20 Posts)
Bananasinpyjamas1 Wed 07-Oct-15 14:00:07

Hi, I had a (private) ADOS assessment and it has just arrived as a report today to say my child has 'moderate ASD', feeling a little emotional!

It is not a diagnosis yet - it was done by OTs and they recommend going to psychologist/psychiatrist to be fully looked at. Has anyone else advice or experience of what to expect now?

I have to tell my partner later and he's not really been keen to have him assessed at all, it was me pushing it as I felt something was not right for a while. Our DC is lovely, a very active child who loves tickling, laughing, but is incredibly shy, obsessed by letters and numbers, and delayed speech. In the assessment they said he had limited vocal range, facial expressions, echolalia, repetitive and stereotyped interests (only played with blocks) and that he 'mouthed' and 'peered' - not sure what that means?

OP’s posts: |
zzzzz Wed 07-Oct-15 15:15:56

Message withdrawn at poster's request.

Bananasinpyjamas1 Wed 07-Oct-15 15:18:48

Yes, I did say it is not a diagnosis yet. But it is the first time DC has been assessed and it has confirmed my suspicions. How long does it take now to get 'diagnosed'? And what do I do to help my DC in the meantime?

OP’s posts: |
c4kedout Wed 07-Oct-15 16:08:14

you need to get into 'the system'.do you have any referrals pending?

as for how long it takes to get a dx - anything from months to a couple of years. unless you go private

Bananasinpyjamas1 Wed 07-Oct-15 18:08:21

No, that's why I did this ADOS assessment. It takes several months just to get a SALT assessment here, my GP just refered me to hearing specialist, the public health nurses never got back to me.

It seems like now it the time that I'd need some support - not a long way down the line. I suppose at least this assessment helps me to know that at the moment, my child is presenting with a lot of autistic traits, enough for them to affect their and my life in a way that I do want to get some help with. I was thinking of sending the report to the SALT team to highlight the issue?

OP’s posts: |
zzzzz Wed 07-Oct-15 18:11:14

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mjmo0oseface Wed 07-Oct-15 18:54:46

How is old is your child? If still under a Health Visitor, they may be able to get the ball rolling for you? That's how it worked for us. Health Visitor referred us to SALT and paediatrician. It took about 6 months from initial contact with HV to a dx. We were on the waiting list to see paediatrician for 4 months which I do believe is really quick. DS was diagnosed at 2 years, 4 months old which is quite young but his is severe autism and there is a strong genetic link in DH's side of the family of autism.

Or go to GP and ask to be referred to Paediatrician for ASD assessment? Since getting 'into the system' as a pp said, DS has made so much progress with SALT and his nursery team. Don't give up!!

c4kedout Wed 07-Oct-15 19:04:55

I am puzzled. the ADOS is the assessment for Autism and can only be done by qualified paeds/salts etc. Did the OT do the ADOS?

c4kedout Wed 07-Oct-15 19:06:43

I would go to GP and demand a referral to a developmental paediatrician. take the OT with you. your DS needs to be seen by a developmental paediatrician.

is he at nursery? does he need/get additional help?

zzzzz Wed 07-Oct-15 19:13:45

Message withdrawn at poster's request.

Bananasinpyjamas1 Thu 08-Oct-15 00:35:55

It was by two OTs but one was also senior 'paediatric' therapist - they did the ADOS assessment. They said I could talk to them about the next step - but I'm not sure we can afford more than what we've paid already.

My child is not under a health visitor, and doesn't go to any nurseries. At the moment no-one is giving me any additional help, it's just me at home with child during the day, with no outside input. I have a self referral form for the SALT initial assessment, which takes 4-5 months apparently.

The issues are that he gets very fustrated with lots of little things really, e.g. if I take him for a walk he gets cross when we turn around or cross the road. Fussy about food. Dislikes loud noise so I have avoided anything loud - but this includes people and me talking to them. Little speech so I'm not keen to potty train just yet.

I'm thinking of any future social interactions and school - how to set the groundwork for this so he has a smooth transition. Another year waiting for an official assessment - I'd dearly love a bit of additional help from a professional in the next few months. I've other kids and step kids, and where I live is a bit isolated.

OP’s posts: |
zzzzz Thu 08-Oct-15 00:47:56

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zzzzz Thu 08-Oct-15 00:54:20

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c4kedout Thu 08-Oct-15 07:50:32

I am puzzled as you why had the ADOS but not a diagnosis. the ADOS is a diagnostic tool to diagnose autism. this all does not make sense.

You need to be seen by a developmental paediatrician. don't wait for SALT to come through but go to GP and request a referral. don't take no for an answer.

if you wait for the salt and the salt has concerns, it will be another few months until you will be Seen by a paed. and some Salts have no clue about autism (ours for example even though my child is classed as severe - Salt didn't see the signs).

how old is your DS? when is he due to start school?

c4kedout Thu 08-Oct-15 08:00:01

or when is he due to start nursery? if he starts school next year I would look into an EHCP as well. this takes easiliy over 6 months to sort and if he attends nursery and has obvious support needs, then this will help a lot in your application for an EHCP.

Bananasinpyjamas1 Thu 08-Oct-15 15:14:36

Thanks for your replies. The ADOS was private, they are qualified to administer it and I have a written report. It concluded that my childs 'presented with moderate asd traits' but that this would need to be followed up with a multi-discplinarian team in order for it to be a formal diagnosis. They recommended following up with a psychiatrist/psychologist/paediatrician.

He's not due to start nursery, will start a pre school in 1 year. Sounds like I should take the report to my GP?

OP’s posts: |
c4kedout Thu 08-Oct-15 15:43:19

take it to GP and request referral to a developmental paed.

PolterGoose Thu 08-Oct-15 15:52:48

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zzzzz Thu 08-Oct-15 16:24:39

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zzzzz Thu 08-Oct-15 17:03:38

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