Struggling to manage 7 year old with Autism - Need your urgent advice

[worriedmum12345]

Hi everyone. Thanks for a great forum. I'm hoping some kind soul can help me on here.

I have autistic child, who as she is getting older, I'm now really struggling to manage. She is struggling with almost all aspects of life and requires almost round-the-clock supervision and support. I really don't know what to do. Some examples of the issues are:-

• She is having lots of difficulties with all school subjects and is way behind other children, especially in Maths & English
• Other than the classroom teacher, She requires one-to-one support from SENCO because she can't focus, wanders off out of classroom etc.
• At home, she has regular meltdowns, sometimes for no reasons. She gets very frustrated at the smallest of issues and somewhat becomes aggressive. If there is any unexpected noise, she will cover both her ears.
• Even if we try, she doesn't go to sleep till late hours and tends to wake up really early
• In the last few months, she has started doing very odd things, such as running away from home, hiding in places and I have to send out a search party to find her.
• We live on the main road and one of my main concerns is that she has no awareness or sense of road safety & dangers and will try to wind-down the window and escape out of her child car seat or if outside, she will run towards other oncoming cars. Other examples are messing around with electrics, such as shoving metal objects (hair clips, safety pins or anything else that she can find) inside light or socket switches.

I'm looking for advise and help for the following:-

1. Can you recommend a good SEN tutor where they can teach an autistic child in person or online? I can't afford much, but I'm willing to give this a try if it helps with their education.
2. Currently she is getting middle-rate care and lower-rate mobility. But I'm thinking whether it's worth apply for higher rate care/mobility?

Does DD have an EHCP? Specialist tuition can be included in there. Has she had a sensory OT assessment and is ongoing sensory OT in her EHCP?

Does DD take anything to help with sleep?

Have you had a home OT assessment to look at making the house safer and better meet DD’s needs?

For the car, you need a crelling harness.

Whether DD would get high rate care depends on what you mean by really late and really early. To decide whether DD qualifies for HRM have a look at this booklet and the flowcharts for SMI and VUW in here. Something to be aware of no matter how much you think it is unlikely, the rates can go down as well as up.

Hi OvertakenByLego. Thanks so much for your reply. In answer to your questions:-

1. Yes DD has EHCP - The only support being provided so far is assisting her with focusing/concentration. a fidget gadget, a bit of support with the subject, but nothing like a one-to-one tutoring would provide. That's why I was hoping someone could recommend a website or place where I could request for one-to-one tutoring to see if this improves her knowledge in certain subjects.
2. No she has not had a sensory assessment because of the long waiting lists being over many months/years, but she has been under a paediatrician who has noticed all the signs of autism.
3. No she's doesn't take anything to sleep and being honest, I'm worried that she would be given some form of sleeping medication in liquid or tablet form which may be bad for her.
4. No she hasn't had any home assessment and I'm not sure what or how to get such as assessment.
5. I already have a harness, but she can easily get out of that.
6. Thanks for the links to the booklet and flowchart. Are there any charities or organisations that can help me complete an amended DLA form. Also what evidence could I provide them with?

Thanks very much

1.You should request an early review of the EHCP (on their website IPSEA has a model letter you can use) in order to try to improve the EHCP, via appeal if necessary. At the moment, it isn’t fit for purpose and it sounds like DD needs more support than it currently provides. If DD requires specialist tuition it can be in the EHCP. Personally, I wouldn’t fund tuition yourself. I would save your money and appeal when you next have the right of appeal, seeking independent reports.

2.Assessments could have been part of the EHCNA without sitting on the normal waiting lists. And, ongoing provision included in the EHCP without sitting on the normal waiting lists. An early review and appealing if necessary getting independent reports can resolve this too. Alternatively, you could request a reassessment of needs (IPSEA also has a model letter for this), but you may still end up appealing in order to get the necessary provision.

3.Melatonin is usually the first medication DC try to aid sleep. It is one of the safer medications. It is naturally occurring, some people, especially ND individuals, don’t produce enough naturally, so topping it up helps. I would consider requesting it.

4.If you google OT equipment, aids and adaptations and your local authority you should be able to find who to contact for a home OT assessment to look at making the house safer and better meet DD’s needs.

5.DD shouldn’t be able to get out of a crelling harness. They are specifically designed so DC can’t. Relook at that and if DD can still get out of it look for a specialist car seat clinic.

6.CAB can help complete DLA forms - although how good they are varies. There may also be a local charity. The Cerebra guide can be helpful, too. Evidence depends on what you have. Depending on what is in them the EHCP, paeds letters, referral letters. Do you have anything official from when DD has run away or if you have had social care assessments? Subject access requests to school, hospital and GP may help.

Thanks OvertakenByLego and sorry for the late reply.

1. I want to apologise and correct myself on the EHCP. All this time I thought an EHCP was what the school has given her, but I now realise we don't have any such thing. All we have is a 'Learning Development Plan' which simply states that to help her focus, she is given a 'fidget' gadget and that's about it. So what is a EHCP and how do we get this?
2. She hasn't had a sensory assessment yet. That's because when the paediatrician diagnosed her, she said that had DD been assessed before she turned 5, the diagnosis would have been instant, but after 5, she has to go on a waiting list, which is a few years long. But until then our DD is being failed by school, doctors and the local authority.
3. I'm willing to speak to the GP about Melatonin to see if this could be prescribed.
4. Since DD has not got EHCP, can we still get the LA to assist us?
5. That's fine, thank you.
6. Sadly we have nothing official about DD running away nor any social care assessments. I'm willing to hold off on this one for now as the above issues need dealing with first.

1.An EHCP is an education, health and care plan. It is a legal document that sets out a child’s needs and the provision they require to meet those needs. An EHCNA is the education, health and care needs assessment you first request. On their website IPSEA has a model letter you can send to the LA. If the LA agree to assess it can include various assessments that will be helpful for DD. If they refuse to assess post back on MN and you will be helped with the next step of appealing.

2.Support in school is based on needs rather than diagnosis. The school must make their best endeavours to meet DD’s SEN, diagnosis or not. I would request a meeting with the SENCO. Then follow up with an email so you have a paper trail as evidence. If you request an EHCNA and the LA assess it can include a sensory OT assessment without the need to sit on the normal waiting list.

3.Many GPs want melatonin to be initiated by a paed or CAMHS. If DD is not actively under the paed anymore you could either request a referral to them specially for sleep or to a sleep clinic.

4.Yes, they can still help without an EHCP.

6.You might have difficulty evidencing HRM at the moment. If you request an EHCNA you could then use any assessments as evidence.

1. Thanks for explaining this. See below (2).
2. Apologies, but I read your message a little late, because earlier today I have written a strong-worded email complaint to the school, explaining to them about the ongoing issues we've been having with their SEN staff fobbing us off. I added in there that DD was in Year 1 (2021) when SEN got involved and since then SEN staff have changed 7-8 times, each time the new SEN member making excuses that they had no knowledge of what actions the previous SEN staff had taken, adding that her paperwork went missing on multiple occasions and they were supposed to deal with an EHCP application, but according to the latest SEN member, they don't even know if any application has ever been submitted. The school headteacher has already replied and has arranged a meeting on Friday to discuss this issue further. I'm not sure if I should have done this, but I also threatened them with legal action under the Equality Act 2010. Any advice on what to say/do in the meeting or is such a threatening email this going to cause me/DD any issues?
3. Thankfully DD has an upcoming appointment with a paed in a few weeks, so it's something that I will bring up.
4. I'm going through a lot of stress right now, so I'm going to try and contact the LA to see if they can assist with DD equipment.

For No.6, I'm going to hold off on that for now - at least until I can resolve 2.

Thanks for all your help.

Don’t worry about sending the email. Unfortunately, DC whose parents advocate for them get better support. Ask for the SENCO to be present as well as the HT. If you can, take someone with you to take notes. Some ideas of what to ask: what support DD has been receiving, why hasn’t an EHCNA been requested (one hasn’t been requested you and school would know!), what support they are going to put in place going forward? If there is any specific support DD needs make a direct request for it. Also ask why and how DD’s paperwork has been ‘lost’ so many times (I don’t believe this and raises data protection issues). Request they support an EHCNA application (but make the request yourself because then you know it is done ASAP rather than at some point in the future.) Remind the school under s.66 of the CAFA 2014 they must make their best endeavours to meet a pupil’s SEN.

If the meeting goes well and the school is supportive and apologetic take the opportunity to ask them to write a supportive letter for HRM for a DLA COC. If the meeting isn’t going well I wouldn’t ask this.

Following the meeting, send an email setting out what was discussed. Ask them to correct anything they disagree with. Then you have a paper trail of events as evidence.

I would also submit a SAR to see exactly what paperwork there is.

Thanks again for your excellent advice which I've fully taken on board.

I've also got a few updates for you:-

• I have insisted and have been told SENCO will be present at the meeting tomorrow.
• I spoke to the LA about getting an EHCP (Is that the same as EHCNA??) - They have advised that once an EHCP application is submitted by us, the council department do most of the work in contacting the relevant agencies. But he also advised that in order to make a strong case to get such funding, I should not submit an application for EHCP until I have as much evidence as possible (From GP, Consultant, School, Parent letters etc). I'll be honest - I don't know where to start from - Is there any organisation that can give me that one-to-one assistance to prepare such paperwork? How can I make my case stronger?

Don’t listen to the LA trying to delay you requesting an EHCNA. Unfortunately, many LAs (and some schools) try to do this. You should send as much evidence as possible, but you don’t need to delay by waiting for any specific evidence e.g. from an ed psych, and remember you can submit additional evidence. You could submit SARs to the GP, hospital, school to collate evidence.

Start by reading IPSEA and SOSSEN’s websites. Both have lots of helpful information and advice lines. IPSEA has a model letter you can use to request an EHCNA. There are paid for services that will complete the paperwork but you really don’t need that a this point. Save your money for if you need to appeal and need independent reports. There is SENDIASS which is free but in many areas they are not helpful and repeat the LA’s unlawful policies.

Hi OvertakenByLego. Thanks for your helpful post. Sorry for the late reply. Been stressed out about all the stuff going on.

Anyway, I've got an update about our school meeting with the SEN and HT:-

1. I've raised a formal complaint and the HT said she will be investigating this, but it will take time.
2. The HT admitted that they have been understaffed and a number of SENs had left.
3. I told them that we were promised all sorts of support, but received very little over the last 18 months and that the previous SENs had told me the schools was in chaos and that paperwork for DD had been lost. They denied that any paperwork is missing, so I told them that I will be requesting a SAR.
4. Since the meeting was civil, I thought I'll leave the DLA for now as I'm more eager for them to support me with a EHCP application. They've agreed to do this ASAP.
5. They've also agreed to keep in touch regularly and for any of our meetings/calls with them, will be followed up with an email.
6. They are unsure when DD was originally referred to CAMHS for an assessment and have said that they chase up CAMHS in July 2023 and CAMHS confirmed that DD was on the waiting list. There is a dispute on this one because I also contact CAMHS prior to the school meeting and was told they were unable to find DD on their register.
7. The new SEN said that DD will be given further support to help with subjects, but didn't go into what exactly was their action plan.
8. HT promised to do a thorough investigation and get to the bottom of everything. As you can expect, she denied that any of the SENs have done anything wrong. I made it clear, I wanted a full paper trail as well as clear evidence that DD was registered with CAMHS in early 2022.

Don’t wait for the school to request an EHCNA. Make the request yourself so you know it has been done ASAP, not at some point in the future whenever the get round to it.

Push on specifics about what support DD will be offered.

If paperwork hasn’t been lost, they will know when DD was originally referred to CAMHS because there will be some form of paperwork/data surrounding this. I would also make a SAR to CAMHS. That way you will get data from both sides and it will be easier to figure out the truth.

Sorry for the late reply.

I hope this doesn't cause you any problems, but I'm a bit apprehensive to post everything discussed within the meeting on a public forum. Therefore I have instead PM'd you.