ASD Support Rant

[SerialGoogler]

Just need to vent, although any pointers welcome.

DS13 was diagnosed with ASD around 3 years ago. He has extreme social anxiety which has become so overwhelming he asked me to get him help. Actually, he asked specifically for medication. This was HUGE for him as he doesn't express/vocalise his feelings, it just comes out in behaviour at home and whilst we frequently reach a crisis point, this is the first time he has asked for help.

I told him I would call the GP for a referral but he would be asked to speak to someone first and he would need to be very honest. (He was horrified at that but I explained that doctors don't hand out anti-anxiety meds to children just because their mum asks them to!)

Very luckily we got an appointment with CAMHS via GP within a week due to a cancellation. Last year he had mental health support provided by CAMHS that the school organised but it was based on 'mini-goal setting' and he just said what he thought they wanted to hear. He does not want to share private thoughts and feelings with me, let alone a stranger. But he explained to the CAMHS co-ord all the circumstances that cause him anxiety, which is basically everything about daily life as a human!

Long story short, CAMHS can't help because he won't engage with therapy because of his anxiety. Total catch-22. They signposted us to 1-2-1 support (same thing but less people) and a charity I am already familiar with because they offer parent support, which also offers children group support or an online course so he can learn about his ASD. Neither option is going to work for where DS is right now. I think CBT would be great for him but he can't access it because he won't talk/engage. They are effectively offering exposure therapy without the therapeutic framework of exposure therapy.

Problem is CAMHS is a single pathway and they gatekeep EVERYTHING. He cannot see a child psychiatrist unless we go through them and that gate is closed. If you don't fit their pathway, you can't get help.

I spoke to the GP this morning and the only option is to go private but I was warned that if they decided to medicate, they wouldn't take it on. Nor can they reccomend. So a 13 yo is out of the NHS because they are incapable of treating children as an individual and block access to consultants who can.

Both CAMHS and the GP (the referral one and the follow up one) have asked me if there's any support for ASD. Had to explain to all of them that all we got was the number of specialist nurses and the one time I tried them, they told me to go to the GP!

So now I am going to find a private consultant because doing nothing is not an option. The course of the rest of his life hinges on getting the right support now at such a crucial age (the anxiety has become more entrenched as he's got older and he literally lives day-to-day just to get through it and back to the safety of home. Hopefully, we can get some individualised advice/support privately and maybe CAMHS will bend a little. But I won't hold my breath.

I want to write to someone. Maybe the CCG? I find it mind-boggling that such power and control is given to one entity, and that entity only offers support to children to fit into a single pathway. The NHS is supposed to be for all but really it is highly selective. And yet we all pay into it.

If you've read all this, thank you!

It is far more likely DS can’t engage rather than won’t. CAMHS need to alter their approach so DS reaches a point where he can engage. Complain to CAMHS. CCGs no longer exist, it is ICBs now.

Does DS have an EHCP?

Have you thought about a less direct form of therapy such as animal assisted therapy that relies less on verbal interaction and taps into any interests DS had? Or even something like Mindjam?

Thanks @EndlessLight

You are right - he can't rather than won't. Although if there's a way to reduce the anxiety enough so he can use his brain for something else, there's at least a chance he might be able to 'hear' potential strategies for managing day-to-day life.

I'll look up our ICB - thanks for that. I've aged myself...

He doesn't have an ECHP - academically he's very able although not reaching his potential as he deliberately flies under the radar to avoid attention/interaction. We've had some great advice (the best so far) from occupational therapy, but he doesn't want to stand out so won't allow anything to go on his 'student passport', except for being allowed to have his top button undone as he couldn't stand it anymore! He still got challenged by 3 teachers about it in the first week back though!

Neither primary nor high school have really suggested anything he might need to be put in place officially. And anything suggested by other services would have attracted too much attention. He is allowed to use a laptop for some tests after the occ therapy report and I believe they are accommodating his processing delay with additional time, but no tangible accommodations for ASD.

But you've made me think - if ECHPs are to help him access education I've been thinking far too narrowly in terms of learning difficulty. To be fair to the CAMHS co-ord, she asked me the same and suggested things like 'don't approach X for answers in class' (or something like that) which I now know would greatly relieve some of the pressure. He admitted at the appointment it was one of the (many) things that made him anxious at school - and he is then preoccupied with whether that will happen rather than learning.

School is generally lovely and understanding thankfully, so I will speak to the SENCO about getting one and working with DS to see if there is anything else that can be included. I simply hadn't thought of ECHPs in that way, and of course, it's up to me to push. Luckily I don't mind pushing, but it is exhausting!

Thank you for the refocus - I really appreciate it.

It is best practice that therapy is undertaken alongside medication. Some DC need medication in order to access therapy. So CAMHS shouldn’t discharge just because DS can’t engage with CBT.

There are things the school could put in place that are subtle so don’t draw attention to DS. Things like not calling on DS for answers, but also looking at placement within the classroom.

EHCPs are about more than academic ability. An EHCP could provide therapeutic support DS won’t get via CAMHS. Don’t make the decision on whether to request an EHCNA be based on the school’s opinion. Sadly, many schools incorrectly tell parents their DC doesn’t need or won’t get an EHCP.

It would be helpful to know the reasons of his anxiety. Is there anything that happened at School? It's important to look at the whole person from different angles (e.g. nutrition, emotional regulation, sleeping pattern, physical activity, social life, media and device consumption, the way he communicates his feeling and emotions, the way he processes and retain information - is he a visual learner, by instructions or kinesthetic?). Answers to these and many more questions can give an indication on how to best support him and reduce anxiety. Hope this helps.

Thanks again @EndlessLight Yes, I do feel that he needs one to access the other. And I am prepared to pursue ECHP myself if needs be.

@VoiceinPics I could summarise his list as 'people' and of course school is full of them, including teachers who all have a different style and set of expectations. That certainly triggered this 'event' with a new school year but it's been building for years. I see him from the corner of my eye when I drive him to school. At a certain point in the journey, he starts to steel himself, putting on his 'face', bracing himself, getting 'ready' to go into battle it seems. So sad. I want him to find a way to help him engage with life, have hopes and dreams whatever that looks like for him. He has a great mind to offer the world. He can out-logic anyone. Lots of food for thought - thank you.

I think this is where you stop and consider what is most important: his education or his mental health?

Not all academically able autistic people can manage a mainstream setting. My guess would be that if he wasn’t there his anxiety would decrease massively. Definitely apply for an EHCP. Consider getting him signed off school with anxiety if all becomes completely untenable. If you have the funds consider paying for private EP, SALT and OT assessments so you get a water tight EHCP with all the provision he needs in it.

My academically able child is in a special school with weekly 1:1 SALT, OT and pyschologist sessions.

@SerialGoogler The school environment, with its multitude of people and varying expectations, can indeed be overwhelming for many children with autism. Your son's reaction to the new school year is not uncommon. Schools are often sensory-rich environments, which can be particularly challenging for individuals with autism who may have sensory sensitivities. Plus, different teachers and peers each having their own communication styles and expectations. Have you ever heard of self-regulation strategies? You might want to explore those, along with resources for emotional well-being. There are many approaches available to help deal with anxiety and even transform it into a strength for thriving. Remember that your son's unique way of thinking and perceiving the world is valuable.

Camhs isn’t fit for purpose for ND kids

Warning - long!

We had to go private. My daughter’s (then undiagnosed) AuDHD made her so anxious that she developed a neuropsychiatric condition. In spite of private and then NHS diagnoses of functional neurological disorder,l and being told that autism was likely at the root, CAMHS forgot to refer her for an autism assessment (I had filled out all the paperwork they sent me), the psychiatrist refused to see her as “FND does not exist in children” and after 18 months, therapy was not forthcoming and we had exhausted private clinical psychology routes. We had a private ASD diagnosis and saw a psychiatrist privately who prescribed sertraline. When the NHS therapy finally happened, the sertraline had reduced her anxiety enough for her to really engage. An increase of dose got her through the high stress of GCSEs and thanks to a combination of meds and therapy, she is now, at almost 17, living well with autism, ADHD and FND.

The GP agreed to shared care so we get her meds on the NHS, but they weren’t too expensive privately. I will warn you that going into them was awful for the first 6 weeks though - they really did make her more suicidal and I can see why they need to be prescribed when under the care of a psychiatrist. 100% worth it though.

Oh and we worked very closely with the school to put in place adjustments that helped to reduce her anxiety.

Just a tiny update: We've had an assessment appointment with a private psych, and it was so wonderful as a parent to have the insight and understanding of someone with expertise in ASD. She framed many of his contradictory behaviours in a way that will help me to help him in the meantime, and she is open to medication, acknowledging as @Thespymum experienced, that it may be what he needs to engage.

I also complained to the ICB about their CAMHS provision. Will let you know what the response it.

Thank you for all taking the time to reply.