The autism thread
Discussion
Highway Star said:
I've posted a couple of times on this thread over the past couple of years, but am wondering if anyone has advice on a couple of matters?
My son is 8 (year 3), has had a high functioning ASD diagnosis since he was 5. His school have, on the whole, been great and his SENCO is very supportive and helpful, so we are very lucky in that respect. For the past two years the school has been receiving supplementary funding for him which has enabled him to have 1-1 support pretty much full-time throughout years 1 and 2 (in excess of 25hrs/week). That funding ended last month and the LA won't provide any further without an EHCP. He, when focussed and supported, performs well academically. However he needs support to engage (he was unsupported in a recent reading assessment and did not engage at all resulting in a reading score two years lower than his chronological age when previous assessments where he'd been supported to keep focussed saw him read significantly above his age). He also requires a lot of support in terms of his emotional, social and relationship development, confirmed by recent reports from the LA's Communication and Interaction team which concluded he will require ongoing, long term support in these areas.
His SENCO and I completed an application for a EHC Needs Assessment, which the LA has now said they won't undertake as he isn't underperforming academically. His SENCO and I agree this seems illogical as his progress is only due to having received support over and above the local offer (I have found the reference in the DoH/DoE guidance that LAs should take this into account when deciding if a needs assessment is required). There was no mention of his emotional or social developmental needs, just academic, despite the LA's own reports being resubmitted to them as part of the application. We are trying to meet with the SENO at the LA to discuss and also will apply for mediation ahead of a possible appeal to the SENDIST. I will also make contact with SENDIASS for their advice.
We are fortunate enough to be able to afford to get legal representation should we proceed to tribunal - has anyone had this experience? Was 'lawyering-up' worth it? Are there any particularly well-regarded firms?
Also, we feel it is time to talk to our lad about his diagnosis. With possible stuff now ongoing to try and get an EHCP for him and other things I notice when dropping him off and picking him up each day at school (how some kids react to him), I think it's the right time. His SENCO has provided what I think it is a helpful video as an introduction and I hope I can help to talk to him about my own experiences (I am going through my own diagnosis process after having had years of mental health struggles and show a large number of traits which would indicate I am on the spectrum - I scored 185 on the RAADS-R and 42 on the AQ test for example). Any other advice on how you addressed a diagnosis with a child would be really helpful. Many thanks.
I’m not sure if it will help or not but since starting this thread I have begun randomly blogging about my journey with my daughter’s autism so here’s my post describing the day we told her about her autism: autismdadMy son is 8 (year 3), has had a high functioning ASD diagnosis since he was 5. His school have, on the whole, been great and his SENCO is very supportive and helpful, so we are very lucky in that respect. For the past two years the school has been receiving supplementary funding for him which has enabled him to have 1-1 support pretty much full-time throughout years 1 and 2 (in excess of 25hrs/week). That funding ended last month and the LA won't provide any further without an EHCP. He, when focussed and supported, performs well academically. However he needs support to engage (he was unsupported in a recent reading assessment and did not engage at all resulting in a reading score two years lower than his chronological age when previous assessments where he'd been supported to keep focussed saw him read significantly above his age). He also requires a lot of support in terms of his emotional, social and relationship development, confirmed by recent reports from the LA's Communication and Interaction team which concluded he will require ongoing, long term support in these areas.
His SENCO and I completed an application for a EHC Needs Assessment, which the LA has now said they won't undertake as he isn't underperforming academically. His SENCO and I agree this seems illogical as his progress is only due to having received support over and above the local offer (I have found the reference in the DoH/DoE guidance that LAs should take this into account when deciding if a needs assessment is required). There was no mention of his emotional or social developmental needs, just academic, despite the LA's own reports being resubmitted to them as part of the application. We are trying to meet with the SENO at the LA to discuss and also will apply for mediation ahead of a possible appeal to the SENDIST. I will also make contact with SENDIASS for their advice.
We are fortunate enough to be able to afford to get legal representation should we proceed to tribunal - has anyone had this experience? Was 'lawyering-up' worth it? Are there any particularly well-regarded firms?
Also, we feel it is time to talk to our lad about his diagnosis. With possible stuff now ongoing to try and get an EHCP for him and other things I notice when dropping him off and picking him up each day at school (how some kids react to him), I think it's the right time. His SENCO has provided what I think it is a helpful video as an introduction and I hope I can help to talk to him about my own experiences (I am going through my own diagnosis process after having had years of mental health struggles and show a large number of traits which would indicate I am on the spectrum - I scored 185 on the RAADS-R and 42 on the AQ test for example). Any other advice on how you addressed a diagnosis with a child would be really helpful. Many thanks.
Jonmx said:
Hi folks, I've dipped in and out of this thread and read some great advice and learned a lot.
Son is 5, will be 6 in July, was diagnosed with Autism age 3 and has the EHCP etc in place. He also has Cystic Fibrosis. Currently at a local prep school (heavily discounted), but they cannot cope with his needs anymore, so has been allocated a place in a SEND unit at a state school some 25 miles from his mum's house where he lives full time (we're divorced but on good terms). He starts there next term. We're struggling to find child minders who will take on the wrap around care when he gets home (He will be taken there and brought back by taxi provided by LA). It's reached the point that we're considering an Opare moving in with her to resolve this situation. A Nanny is £25ph which is unaffordable; sadly neither of us are powerfully built or company directors.
Have any other parents of little ones with autism encountered this issue, or do they have any suggestions/recommendations on how to resolve the issue? We're based in Devon.
It’s not something I have direct experience of, but look into “Direct Payments” from the local authority which would allow you to employee a Personal Assistant for a certain number of hours per week to meet your need.Son is 5, will be 6 in July, was diagnosed with Autism age 3 and has the EHCP etc in place. He also has Cystic Fibrosis. Currently at a local prep school (heavily discounted), but they cannot cope with his needs anymore, so has been allocated a place in a SEND unit at a state school some 25 miles from his mum's house where he lives full time (we're divorced but on good terms). He starts there next term. We're struggling to find child minders who will take on the wrap around care when he gets home (He will be taken there and brought back by taxi provided by LA). It's reached the point that we're considering an Opare moving in with her to resolve this situation. A Nanny is £25ph which is unaffordable; sadly neither of us are powerfully built or company directors.
Have any other parents of little ones with autism encountered this issue, or do they have any suggestions/recommendations on how to resolve the issue? We're based in Devon.
I know parents that have a PA for various reasons:
- to allow their child to go out “independently” of their parents just like any other teenager would
- to give respite to the parents
- to allow the parents to spend time with their other child
And many other reasons it’s definitely worth looking into.
Note that you are the PA’s employer but there are organisations and charities that can help with the admin and payroll side of things.
Just a thought anyway.
Will you need any adjustments because of your autism? If not then it’s a moot point, if so then there is no reason to have declared it earlier but depending on the people concerned and their empathy and experience their reaction could vary.
What industry is this and what’s the role (sorry if you’ve mentioned this already, skimming this on my phone). Some organisations and industries are much more tolerant of disabilities under their diversity and inclusion policies, some of which might be publicly accessible to give you a feel for what to expect.
What industry is this and what’s the role (sorry if you’ve mentioned this already, skimming this on my phone). Some organisations and industries are much more tolerant of disabilities under their diversity and inclusion policies, some of which might be publicly accessible to give you a feel for what to expect.
Sporky said:
Thanks for sharing. I had no idea the co-existence of autism and adhd was in any way controversial. I’ve often heard people say that “autism comes with friends” like adhd, pda etcGassing Station | Health Matters | Top of Page | What's New | My Stuff