Help beyond diagnosis?

Hi everyone, 

our son is 5 and was diagnosed when he was 4

with ASD with demand avoidance and sensory issues.

He suffers from a lot of social anxiety and will not attend school. I went with him 1/2 a day a week and even that was too much. So he is home schooled.  

My question is to other parents - beyond diagnosis have you had any help? We have had nothing! 

My husband and I are exhausted. He is physically violent and aggressive towards us and our 2 year old daughter all day long. He is controlling and highly demanding. We are walking on eggshells all day and night long. 

I am currently writing his EHCP. Once it is submitted will we get any help then? 

  • I mean they will probably push hard for him to return to school if they grant him an EHCP as part of its terms. On the other hand the one main excuse they generally use for rejecting an EHCP is that the school can provide sufficient special needs help itself without one ... which obviously doesn't apply here.

  • Hi there Peter - me and my husband are writing the EHCP. The application- he is home schooled and I think it would normally be completed by the SENCO

  • EHCP application or your opinion on what should be in the EHCP? Right now the legal requirement to meet EHCPs is partly suspended but it should in theory be a legal requirement when there's not a pandemic on.

  • This was not my experience Blue. The school was fantastic and it was my choice not to get the diagnosis, they were completely fine with my choice, they started the process and got all the forms for me.

  • Schools are really dishonest and they will try and deter parents from seeking a diagnosis for their children because of financial restraints. if they feel that your son will get through school with very little intervention they will try because acknowledging your son has additional needs requires them to finically cover the cost of extra support while it is being explored and it can take in some cases several years before a child receives a formal diagnosis of autism or ADHD. Local authorities will only fund additional support once a formal diagnosis is given and do not back date from when schools provided the support so it come out of the school main budget. You'll often find in secondary school they will often dump children with additional needs with no diagnoses in one class sharing one teaching assistant between thirty children to save money. 

    The issue isn't necessary the school, this is a massive issue that exists across the country because of the current minster for education denial of current situation.   

  • I can't answer your question but did not get my son diagnosis at that age partly because teacher said  nothing would be done differently if diagnosed. He was extremely lucky to have a teacher that went out of her way to integrate him in the class. This makes me wonder if you could try a different school, and one of the other answers suggests this might be one way that you may get help. 

  • An option here and it applies to children of all ages and even adults is request a needs Assessment from your local authority. Once requested they have to carrier it out. sometimes it involves a social worker or a support worker and they will carryout an assessment. 

    Once they have carried out the needs assessment they will offer you a range of support, some of which is hidden and requires a referral from either a doctor or social worker to access . They will also create EHCP and looking into possible future needs and support your son may have. they may help you integrate your son into main stream or specialised school and even help finically with costs depending on personal situation to assist. They can even help finically with home schooling equipment & resources. 

  • My children are now adults but, if I were starting out again, I would look at the work of The Nurture Programme, run by Jodie Isitt.  Ausome Training are also very useful, I've found, plus there are some good FB groups like Autism Inclusivity where you might get fuller answers.  

  • the Dyselxia i always knew about,,, then 3 years ago after having been through university  I was diagnosed with autism. I happen to watch a video on ADHD ( YouTube )   and it explained the distractive and very spiky mind I have ---- I am working up to getting a formal diagnosis for it. The ADHD to me is worse than my autism at times. 

  • It’s interesting to read your profile Aidie - I think our little boy also has ADHD and dyslexia too