ASD and anxiety/depression

[JLW69]

Hi. Looking for advice for my 14yr old son he is diagnosed with ASD and school based anxiety. His school attendance not good due to masking causing chronic fatigue/depression. He will stay in bed for a few days to recover not wanting to speak to anyone. CHAMS refused referral from GP again actually telling me this time they cannot help yp with asd (in Cheshire West area). GP said unable to help but stay in touch. School not helping telling me it's my responsibility to get him in. Have another meeting in school next week. Have asked school for local authority autism team help. Where do I go next how do I get help. I go round in circles talking to agencies (not being able to help). I would happily find the money for private help. Anyone in similar situation? Any suggestions? TIA

Hello
Is going back to the consultant that diagnosed the ASD an option?
Also SEN plan should be at school? If you haven’t had a copy get one and Insist on input
Speak to GP and request an OT referral as this may help in terms of things to combat the anxiety.
Also social services
Cheshire west should be doing more- they have a history of letting people down- lots of laws were changed due to them- Google a guided cage is still a cage and you will see the story I mean.
Look at the school day in parts with your child is there bits that are good? If so why? Can this be replicated for the bits causing anxiety?
Focus in supporting his ASD as there is probably things relating to this that trigger the anxiety x good luck x

As DS cannot attend school full time the LA have a statutory duty to provide alternative arrangements, are they?

In addition to this, you should apply for an EHCNA. IPSEA have a model letter on their website you can use. The benefit of applying for an EHCNA and an EHCP is its possible to get a mental health assessment (and other assessments that would help e.g. OT and SALT) and support that way without the need to sit on normal waiting lists.

Also check how the absences are being recorded.

Have you complained about CAMHS refusing the referral? Some areas try to say they won’t/can’t see DC with ASD but when parents persist with a complaint things change.

If you don’t already start a DLA claim too. If you do go down the private route it would help fund it.

We have a support thread here too, if you want to join.

My autistic Dd stopped going to school in year nine and is now about to 'leave' with no qualifications.
If I had my time again - I would have signed her up to an online school so that she had some sort of routine at home in an environment she could cope with.

As it is her mental health has crashed. She won't engage with any of the services who can help. We have CAMHS, Specialist autism team, SS, tried private councellors, even had an LA tutor at one point.

I wish I had intervened at an earlier stage before everything got so dark and hopless. In the end on-one else was able to help but I didn't know that at the time.

Pimpernella it is probably can’t engage rather than won’t. DD needs the support adapting/altering or different support to enable her to get to a point where she can engage.

You wouldn’t have needed to pay for an online school, the LA had a duty to provide suitable arrangements. This should have begun after it became clear 15 days would be missed, the days didn’t need to be consecutive or already missed. If the tutor wasn’t suitable and DD needed provision in another format such as online schooling that should have been provided.

Yes - you are right - can't.

She was only diagnosed in January and the EHCP still hasn't gone through.

Lockdowns complicated everything schoolwise at first since, in theory,
everyone was at home and provided with online schooling.

To be honest - our main focus now is keeping her safe - and we not managing that very well. 😕

Pimpernella Sorry if my post came across as snappy, that wasn’t my intention. It’s just important to use can’t rather than won’t since many professionals discharge using the excuse of won’t engage when its actually can’t. Not being able to keep DS1 safe is what got us more support from CAMHS and social care.

When did you apply for an EHCNA? Are the LA sticking to the statutory timescales?

No offence taken. It's true. So many of the services have indeed said they can't help because of lack of engagement and they have a long waiting lists.

The EHCP has been finally submitted and we are in the waiting period now. The problems with it were getting it written in the first place. I said we'd do it ourselves at the start of year eleven last September since we were running out of time. No no! They'd get it done and here we are - almost out of time! Have yet to see whether LA stick to timings but if it is refused - I guess we will take it over since she will be off roll.

She feels there is no point in engaging since she isn't going to live much longer. I don't know what to do any more.

Sorry for derail OP. Many autistic children do manage to continue their education. Ours is only one story.

With DS1 every time someone says can’t I correct them and insist paperwork is corrected. It is frustrating as DC wouldn’t chose to be like they are.

The timescales for EHCPs are here, if the LA don’t stick to them you can force them to via judicial review, often the mere threaten is enough. Appeal (only parents can appeal anyway so being Y11 doesn’t matter) if the EHCP is refused as the majority of appeals are upheld.

Oh thanks - didn't know that.

Thank you for all the messages. Given me some things to do. ECHP and DLA claim are first on my list. School keep telling me that the ECHP won't be accepted and won't make a difference! Have a meeting in school at the end of next week shall be telling them I will apply for ECHP and want some online schooling arrangements for Ds.

He absolutely needs an EHCP.

Take no notice. You need to ring SENDIASS and get them to come to the meeting to support. If they can't come - change the meeting to suit when they can come.
If there is one thing I've found - its good to have people on side to chase and put pressure on the school.
We have Barnardos triggered by our daughter being at risk of hospital admission. I certainly don't have much resilience or proactivity left. If we hadn't had Banardos advocating for her, I dont think the EHCP would have happened.

Sendiass will know all your rights and won't let the school fob you off again.

As I said upthread - there is no need for this to get worse for your child if he is provided with the adjustmemts he is entitled to. I am so cross for your DS and all those like him.

I have just read Avoiding Anxiety in Autistic Children by Dr Luke Beardon. Its an easy read and an eye opener as to all the ways the world can cause anxiety for autistic people. The teachers will have no idea. I am a teacher and feel ashamed at my previous ignorance.

Best of luck. x

Unfortunately, some schools and LAs often tell parents DC doesn’t need or won’t get an EHCP but parents go on to successfully apply themselves. A good EHCP will definitely help.

It is the LA rather than the school with responsibility for providing education to those unable to attend school full time.

Be careful with SENDIASS, some are good, but too many repeat the LA’s unlawful policies. They receive LA funding so aren’t totally independent and will ultimately toe the party line. IPSEA and SOSSEN are better.

The Cerebra guide is helpful for completing the DLA form.

@Pimpernella has DD had a CETR?

Yes - two weeks before her first suicide attempt. 😕

@Pimpernella CAMHS and social care need to pull their fingers out and provide more support for you and DD. Have they held another?

There was talk of one but it didn't happen. They were very against an admission but DD really wants it.
In the meantime she has started to tell us about the auditory and visual hallucinations she has been having.
We see her psychiatrist tomorrow.

Pimpernella If you think an admission is necessary do push for it and another CETR. Admission is usually a last resort, and often put off because of the difficulty finding a bed. Some DC think it will solve all their difficulties too, which isn’t the case - for some it causes just as many as it solves. An alternative is asking about attending a CAMHS unit as a day patient.

I agree an admission would probably be unhelpful, even damaging. She has no way of knowing this and doesn't believe anything I say. But I do understand the exhaustion she feels of having to restrain yourself from harm.

Will ask about outpatient care tomorrow - thanks.