Here is a timeline of our autism journey, from the time Victoria was born to the present day. It is often said that the processes around autism, be they diagnosis, education or others, are rather opaque and you never know where you are or what you should expect next. Hopefully our story sheds a little light on things for you.
Our Autism Journey
It was at preschool that we really began to see difference between V and her peers
This was the start of our process to getting a diagnosis for Victoria, so we knew how best to support her
After an initial assessment by a community peadiatrician Victoria was referred for genetic testing and a follow up in 6-9 months. It was not felt necessary at this stage to assess for autism.
Genetic test results came back clear. These were done to rule out some of the rarer conditions that can be identified using genetic testing, and are not related to autism which cannot, currently, be identified in this way.
Given our concerns and how she presented to the paediatrician, she was referred to the “Joint Social Communication Clinic” for possible Autism Spectrum Disorder.
A SALT assessment was carried out. The report produced included a small number of suggestions to help with Victoria’s speech and language needs, but was really a referral to her school’s Speech and Language Therapy Service for an assessment of her speech, language and communication needs. I’m not sure if…Read More
A second visit to the same SALT we saw before which resulted in a short report that contained more recommended strategies than before. It also contains results of the following assessments: RAPT assesses a child’s ability to describe a series of pictures using appropriate vocabulary, sentence structures and grammar. An…Read More
The full story of this day can be found in the blog under D is for Diagnosis
We needed to be sure that some of Victoria’s difficulties comprehending spoken instruction wasn’t due to a hearing problem, which was confirmed today.
Victoria had been reporting pains in her legs which we got checked out to be on the safe side. Following an assessment and blood tests it was suggested there was nothing untoward and this was simply “growing pains”, but that Victoria’s autism may well make her hypersensitive to pain.
Having seen first hand how far behind Victoria was at school whilst home-schooling, we kicked off the process of securing an EHCP to establish her additional required provisions in a legally-binding document. We Are Beams helped us massively at this stage, advising on the right way to complete the necessary…Read More
Just before Christmas we submitted the required paperwork and supporting evidence requesting an EHCP needs assessment.
Local Authority confirm that they are “considering whether to carry out a needs assessment”. They are considering whether they will consider granting an EHCP!
The local authority rejected our application for a needs assessment because the information they required from her school had not been received within the required timescales. The information was actually sent by the school at 1.30am the day after it was due, so this was our first experience of petty…Read More
4 days after refusing to assess Victoria for an EHCP, our local authority reversed their decision. A week of calls, paperwork, stress and worry for nothing but we were finally on the right track
Carried out over video conferencing due to COVID. Report received 23/03/2021 Educational Psychologist made a referral for a Speech and Language Assessment, which is unusual as this should have been part of the standard needs assessment.
Held at and with the school. No representation from local authority. Change of placement requested.
Meeting held between us, LA and the school to discuss the EHCP (which has no draft amendments) and the rejection of our change of placement request under section I which was made under the basis that Victoria is “making progress”
No changes to the EHCP that was issued a year ago; changes need to be supported by evidence from “experts” which do not include parents or school staff. On the advice of the local authority and after considering whether we wanted to spent thousands on lawyers or invest our time…Read More
Following a number of assessments, reports and many months of private tutoring (all at our own expense) we requested an early annual review of Victoria’s EHCP
Our request for a change of placement was again declined on the basis that Victoria is “happy” and “making progress”. Neither of these points are evidenced, neither are valid reasons for declining a change of placement under The Childrens and Families Act 2014 39(4) and the Local Authority should not…Read More
To complain about the missed deadlines and the way our Section I (change of placement) request has been mishandled. Response due in 20 working days.
Email asking for us to name our preferred secondary school for Victoria by 17th July. Given we’ve been trying to name a school for over a year, it’s a bit rich to give us 5 weeks to name one now. Unusually, Kent have also named our nearest mainstream school for…Read More
For the first time ever KCC met a statutory deadline, however the “final” EHCP they issued was simply the “draft” we had already rejected as being incomplete and using inappropriate language (eg “as and when required”). The accompanying letter which should have explained the rationale for refusing a change of…Read More
In response to our complaint logged on 19th April with KCC, we received a response from Sarah Hammond (Coporate Director – Children, Young People and Education). Unfortunately this was a standard response basically saying they are experiencing delays in responding to complaints but they will respond as soon as possible.…Read More
AutismDAD is off to court in May 2024! Although it’s a long way off, is much sooner than the lead time was just a few months ago. Importantly, it is before the start of the next school year.
Attended a full day online training session run by Birkett Long Solicitors which I would thoroughly recommend for anyone at any stage of the EHCP or SEND Tribunal process.
The Local Authority oppose our appeal, which is of little surprise except for the reasons. They oppose our appeal for changes to sections B and F as they now want to work with us on a working document to have changes agreed – it’s as if we haven’t tried already!…Read More
Today I received a call I never expected to get from a Senior SEND Tribunal Officer at KCC to inform me that the local authority had agreed to name our preferred specialist provision on Victoria’s EHCP. No court hearing, no more fighting, Victoria is going to Grange Park!
Victoria started at Grange Park School today, a specialist provision for children with a primary diagnosis of autism.