Time scales

[katieboo]

hi all, was just wondering from people who have had a diagnosis, how long it took to be diagnosed .

weve only just started this journey with our son (ive introduced myself on another thread) the stage we are up to is...in short:teachers and ourselves suspect he may have an asd,forms are filled in,forms sent to center, two months later the center tell the teacher they hadnt recieved the refferal,we complete again,re send,after badgering the lady in charge of school age refferals (my son is 5,yr1) by email,recieve a voicemail from her saying that my son's refferal was on the agenda to go in font of a panel on tuesday 15th ,ive not heard anything as of yet,just would like to know whats suposed to happen next,do they inform me as whats going to happen?do they actually inform you of maybe a school visit to assess my son? just feel very in the dark as to what will happen next,what do the professionals on the referral panel actually discuss ,do they just agree from what they may read that he needs futher investigation? im very grateful for any information.thanks kath

[245mcl]

Hi Kath, I was very fortunate that with both my children they were referred and diagnosed within 6 months, which I believe is the expected time frame, the only communication I got was a questionnaire to complete and the date of the appointment. The assessment itself took place in a family centre with three members of the ASD team, one engaged my son in a number of activities, or I should say tried to, and another observed in the room and the third observed with me behind a two way mirror, with my younger son I was able to stay in the room. The diagnosis was made after they had all consulted with each other and they went through all the points they had observed that indicated my sons were on the AS. I have to admit even though the reason we were all there was for a diagnosis, it was still a shock to hear the diagnosis confirmed so much so that when they asked if I had any questions, I could think of none, though now I wish I had written a list just in case. I hope you hear news soon and hopefully some other members can point you in the right direction as what to do next. Regards MC

[Lyndalou]

Hi Kath

 

I think the process happens differently in different areas so there is no set 'timeframe' with regards to diagnosis unfortunately. I am imagining that your son's referral has gone in front of a panel for them (whoever they are) to discuss whether or not he needs to be formally assessed and this is a very good starting point!

 

If you feel in the dark about what is going on then you have every right to ask for clarification about who is involved currently, who will be involved in any assessment, what the assessment is likely to involve and when it is likely to take place.

 

If you have contact with the woman who is in charge of school age referrals - what is her role and will she play an active part in the assessment process? - it is probably sensible to approach her again with these questions. Your first question may be about what the panel were making a decision about, ie, have the panel made a decision and is this with the purpose of organising an assessment. When I got this information with regards to my own son's assessment (if I remember correctly), I then had to confirm attendance at the assessment and then I was sent an assessment pack which provided information about who would be assessing my son and when during the course of the process. My son was assessed at a centre which specialised in conducting developmental assessments which sounds similar to your own situation.

 

The 'not knowing' is very hard...I remember it well. Try to find out exactly what is going on and it'll become a bit easier.

 

Lynda

Edited January 23, 2013 by Lyndalou

[katieboo]

thanks mc and lynda for your replies,im in the northwest of england,we come under merseyside.i had a call from my sons teacher yesterday,she had some questions from one of the ladies who sits on the panel,she was asking me about my sons eyesight as he wears glasses and has a slight squint.the teacher seems to think these questions have come off the back of the panel meeting,she asked me how long he has had glasses,did his squint come on all of a sudden etc,hes had both since he was 15months old,the way she put it to me implied that they think maybe his lack of eye contact is due to his eye sight.i informed her that due to having lived like that since he was tiny that hes well adapted and i really dont think its the reason why,although obviously i what my son to be 'normal' i hate that term ,i also am now panicking that they will try to blame other things for his behaivour ie his eyesight ,his speach not being as clear as it maybe should be for his age,i know in my heart that things arnt quite 'right' on taking him to school this morn,he picked up a small piece of ice ,when i told him to put it down due to obvious reasons why he couldnt take it in to school he got angry and then upset saying icey ,my icey hes my friend,its little things like that they need to know about,i have a diary of things he has said and done which i hope ill have chance to tell them about before they make a decision.thanks again for your replies.kath

[Caroline77]

My 6yr old was assessed and diagnosed in 12 months x

[Lyndalou]

It may be a good thing that they are asking further questions to help aid them in their decision-making although I would hope that these questions would be relevant to making a decision as to whether or not your son requires an assessment for ASD. The question about your son's eyesight might be relevant with regards to his general development and may be something that is considered if he has noticeable lack of eye contact. However, eye contact is only one of a number of indicators of ASD and in fact some children can have too much eye contact not too little; it's anything that falls outwith what is considered to be 'normal' development like problems with speech development and other communication issues, delays with development of personal care skills, eating problems etc

 

The fact that you are keeping a diary of 'unusual' behaviours is good if you want to provide examples to professionals of your concerns.

Edited January 24, 2013 by Lyndalou

[Sally44]

This is a copy to a government document that gives examples of referal times.

I think how it is set out gives a good overview of who does what, although there maybe different people/departments in your area.

 

This is the link: http://www.dh.gov.uk.../dh_4090571.pdf

 

You also need a copy of the SEN Code of Practice. This is the link to that. It talks you through the SEN Graduated Approach of School Action, School Action Plus and getting a Statement of Special Educational Needs. This is the link http://media.education.gov.uk/assets/files/pdf/s/sen%20code%20of%20practice.pdf

 

Also there are different professionals under Health and others under Education.

 

For example the school have access to Educational Psychologist and Speech and Language Therapist. Usually it is the school that should refer the child. The Educational Psychologist works for the Local Authority, and the LA buys in SALT time.

 

The other route is via Health ie. your GP. You can ask for a referal to a Developmental Paediatrician who has experience of diagnosing children with ASD. The DP usually also refers the child to a Clinical Psychologist and may refer to a speech and language therapist [if one is not already involved], and maybe the Occupational Therapist if the child has symptoms of dyspraxia, hypotonia, or sensory issues.

 

The main thing is to get things in writing, always sent letters asking for things to be done.

 

You definately need to write to the EP and SALT [when you know who they will be], and ask them to carry out standardised assessments. Because ONLY those assessments give a percentile, standard score or age related result from which you can measure progress.

 

It took my son 18 months to get a diagnosis. Then a further 6 months to get a Statement. So you need to read up and learn how the system works and keep the pressure up to get the ball rolling because it takes such a long time and in the meantime our children maybe struggling in school.

 

A child should not need a Statement to have their needs met. However ONLY a Statement is a legally binding document, and the provision it contains MUST be provided by the school and LA. Without a Statement any provision or support can be withdrawn and you can do nothing about it.

 

You could also phone your local authority and ask to speak with the Autism Outreach or Advisory Teacher. Again, the school usually needs to invite them before they can go into the school. But if you speak with them and then send a letter to your school's SENCO and the AAT that you would like them to see your son so that they can give advice to school whilst you are waiting to see health professionals regarding a diagnosis.

Edited January 25, 2013 by Sally44

[katieboo]

thankyou for your replies ,ive recieved a letter,The social difficulties assesment group are reviewing his case on monday as they feel he may have a ASD,their going to discuss whats next,im so glad that they havnt just put him on a waiting list they have put him as a priorty .atleast the people in the know agree with us from what they have read,ive been able to write down more info on my son 16pages to be percise lol,and the school have delivered it in person to the team to make sure they get it .thanks again