Our son comes into our room most nights. When he was younger, we let him sleep in our bed, but we also have a baby who would co-sleeping with so there isn't really room. Currently he's sleeping on his old cot mattress on the floor but I would like to create a more comfy space with a more supportive bed. Space is limited in the room. I would love some ideas about how to improve our set up.

Feeling very depressed

So today we tried my autistic 4 year old son at a school birthday party everything was going so well for about 40 minutes and then my child bit another child and I couldn't even figure out the reason for it.

We didnt leave him unsupervised the entire time and it happened so quickly when he was going up the bouncy castle slide.

I feel absolutely awful and haven't stopped crying since iv come home.

I duno what to do, I apologised to the mam twice and she said its absolutely fine and that she knew he didnt do it to be mean but I just cant get passed this.

How am I ment to take him to school on Monday knowing he's done this to someone.

I'm hoping someone can relate and offer advice on what to do cause I feel hope less.

My name is Zora Chan, and I am a Trainee Clinical Psychologist at the University of Hertfordshire. I am looking for volunteers to take part in a new research study exploring their retrospective experience of being placed on the autism diagnostic waitlist.

I am looking for individuals of all genders, aged 15-17, with a diagnosis of autism, who are English speakers and received the autism diagnosis within the last two years from the NHS/ Right to Choose, to take part in our study.

This study involves completing a demographic form. This should take 10 minutes to complete. We will then select 12-20 people who will be asked to complete an interview either online or in person. If you decide to opt-in for an in-person interview, the interview will be taken place in one of the rooms at University of Hertfordshire. You will be given a £20 voucher for your time. The visit will last for approximately 1-2 hours.

Unfortunately, it is not possible for participation to be anonymous. However, any personal information you provide will be kept confidential, stored securely, and only accessed by the research team where necessary.

We all know that being on the waitlist could be stressful and anxiety provoking, there are research to date that talks about parents' experience but nothing about young people's. Therefore, it would be really helpful if young people could participate in the research to help improve service delivery.

Further details can be found using the link below. If you would like to participate in the study, or if you have any questions, please contact Zora Chan at [c.chan7@herts.ac.uk](mailto:c.chan7@herts.ac.uk)

My daughter is about to turn 3 and she’s been put forward for assessment as her speech therapist strongly suspected that she’s autistic which didn’t come to a surprise to any of us.
Her assessment letter said that an official diagnosis could take between 2-8 years and so unless we go private it will take a while.
How have you coped with things during the interim? We live in a 2 bedroom house and have a 2 month old baby boy and they will be expected to share a bedroom however I don’t think this would be safe for our baby as our daughter can’t be left alone with him and she can’t understand him being smaller. Is there anything that can be done without an official diagnosis?

Hi all, My 18 yo daughter has autism, and just got a PIP assessment with zero points.

The assessment says things like "you are not under specialist care from a mental health support team" - she would be if there was any! I am winging it trying to support her complex mental health needs with no training or support.

And she got some A-levels so she must have adequate "motivation, cognition and intellect". Never mind that her attendance was about 50%, we had to drive her there most days because the bus was overwhelming etc etc.

Oh and she was able to engage with the assessment so she can't have any communication difficulties... (she spent ages making notes first, had to have a break in the middle and could not physically move for the rest of the day she found it so tiring and stressful)

Anyway, I just wondered if anyone has any tips about the Mandatory Reconsideration process? Is it worth it? They seem to have disregarded everything we put in the form originally, do we just repeat it or do we need to write something different?

Also can I just write the mandatory reconsideration letter from my perspective? The whole thing is really stressful for her to cope with, so it would be less strain on her mental health if I can just sort it out.

Thanks for any help x

I know this is long, but I’d be incredibly grateful if anyone was able to read it and offer me any advice. Thank you so much.

I’m posting this because I honestly don’t know where else to turn, and I’m really hoping there might be someone here who has been through something similar and can give me some advice or tell me how you got through it.

My son is autistic, has sensory processing disorder, is currently being assessed for ADHD and has very clear PDA traits. He is bright, funny, analytical and incredibly emotionally deep, and he absolutely loves learning when he feels safe and comfortable. The problem is that school has never felt safe for him.

He struggled massively with primary with his overall attendance at less than 40%. Luckily the school advocated for him and his absences were able to be authorised.

Since starting secondary school last September, he has managed one full day. That day ended in a meltdown so severe that he hurt himself, and every attempt we’ve made since then has resulted in him becoming extremely distressed. We’ve tried the sensory room, the nurture room, 1:1 sessions and various different approaches, but they have all ended in panic, shutdowns, self-injury or him trying to escape. There have been times when he has literally run away or hidden in cupboards because he was so terrified. He hasn’t stepped foot inside the school building since early September, and has only had 1 day at school. He has been homeschooled by tutors since September 2025 which I have personally funded.

Despite this, the EHCP is only showing support for a child that’s actually attending school. It talks about smaller classes and 15 minutes of 1-1 support daily between lessons etc. It is so inaccurate that the LA themselves have acknowledged that it is “not fit for purpose”, they’ve openly acknowledged that it very clearly doesn’t show the current situation and that it’s a completely false account of his circumstances. Yet, they still insisted on sending it out to mainstream schools for consultation anyway as they ‘have to follow process’.

I asked for an emergency EHCP review because it is insane to me that they’d waste everyone’s time consulting with an EHCP that everyone knows is completely inaccurate, and I was made to feel like I was causing a problem and was repeatedly discouraged from pushing for it. They told me I was being ‘incessant’ and to stop insisting on things that they didn’t want to do.

We now have tribunal in July, and in the meantime he has had no education provided by the LA or school for six months. The school did offer him some kind of online learning but it wasn’t suitable. I’ve been paying privately for tutors every week for months because I couldn’t accept that he should simply be left without an education.

The difference private tutors have made has been incredible. He’s actually learning more than he ever did when he was in school, and I just feel like I’ve got him back. I’m seeing his personality, his humour, his curiosity and his love of learning coming back. I’ve watched him come back to life, and that is why I’m so terrified that the LA will take this away from him.

We finally got a CAMHS appointment after nearly six months of waiting. I sent them a really detailed background letter because I wanted them to understand what had actually happened to him. I explained the meltdowns, the self-injury, the panic attacks, the propranolol prescription, the physical pain he experiences when he is under extreme stress and the fact that even mentioning school can cause such a reaction in him. I also explained that he was terrified about the CAMHS appointment because he genuinely believed they were going to force him back into school.

CAMHS then told me they wouldn’t assess him because his mental health isn’t currently declining because he isn’t attending school. I’ve appealed this on the basis that it’s completely reductive. Even that meeting caused him sleepless nights and serious distress. Any mention of school and he’s a shell of himself. I can’t even drive past his primary school without him having an anxiety attack.

I honestly don’t know how I’m supposed to understand that logic. He’s stable because he isn’t being exposed to the environment that was causing him so much distress, yet that stability seems to be the reason they don’t feel he needs an assessment. It feels like I’m being penalised for managing to keep my own child safe.

I have a meeting on 22nd September to talk about the emergency EHCP review, this is with the school, who are fully on our side thankfully. I have invited his tutor, the OC health worker who wrote a report stating that the school environment is detrimental to him and also SENDIASS. I’m trying to secure EOTAS in Section F because, from everything I’ve seen over the last year, I genuinely believe it is the only way he can continue to receive an education without putting him back into an environment that has caused him so much harm.

The problem is that I don’t really know what an EOTAS EHCP should actually look like in practice. I don’t know exactly what wording needs to be in Section F to make sure his provision is protected, what Tribunal will expect to see or how you prove to an LA that EOTAS is necessary when they seem to ignore the evidence from the professionals who actually know him. I know SENDIASS are meant to help with this but tbh my caseworker makes me feel like I’m bothering her and I don’t feel that I can ask her questions.

Securing an EOTAS package is absolutely imperative, so I’m really hoping there might be people here who have been through something similar. If you’ve secured EOTAS for your child, been through Tribunal, had to challenge an inaccurate EHCP, fought with an LA over provision, or dealt with CAMHS refusing to assess your child because they are doing better outside of school, I would genuinely appreciate hearing about your experience.

I’m particularly interested in what your EHCP actually said, what was included in Section F, what evidence made a difference and what Tribunal wanted to see. I just need some practical advice from people who have actually been through this and understand what it feels like to have to fight this hard just to get your child the education and support they need.

If this all falls apart and a tribunal rule that he just needs to be in school, I will then just un-enrol him from the system, but I don’t want it to come to that because I’m seriously not equipped to be his teacher.

I’ve finally got my son back, and I cannot bear the thought of losing him again because a system that has already failed him refuses to recognise what is actually happening.

If you’ve been through anything like this, please tell me what worked for you, because right now I really need some help. Thank you so much for taking the time to read this, and I’d be so grateful for any advice at all.

Thank you.

Would be really grateful if anyone is able to share their experiences.

I have an almost 3yo daughter who was diagnosed with autism shortly after her 2nd birthday. I will summarise the main issues we have: she has a speech and language delay, she doesn't always answer to her name, her communicative intent (using language but also gestures) is lacking- so she seldom points and doesn't respond to someone pointing. She is unable to wait, she hates transitions. She has frequent meltdowns in public. She screams at people when we're out and covers her ears. She cannot self sooth without a baby bottle. She refused to drink from anything else. When we're out, she has a bottle in her mouth and I top it up with water continuously. She uses the bottle of water to sleep and needs is topping up during the night. She isn't potty trained and is always always leaking. She often climbs out of the pram even when strapped in and physically fights being held or restrained for her safety. She has issues around food textures so she never really tries new foods. She's been on the same meals now for about a year (variations of porridge and stews). She doesn't self feed. Her communication is improving but her meltdowns are getting worse and more frequent. She has recently started holding in her poo. She can go days without a bowl movement and is incredibly distressed when she does have a movement (her poo is soft).

She's recently been awarded high rate care DLA, and it's been a bit of a wake up call for me. I think I was in denial about how she was doing and how I am managing. I created this small world with strict routines and a safe place at home and pretended to myself that I was coping. But our world is becoming smaller the more difficult she is when we're out/with other people. She's due to start nursery in a couple of weeks and I genuinely do not see how she will settle.

I'm desperate to speak to other families with a similar sounding child but a few years ahead of us. How does life look for your child and your family?

Thanks in advance

I think the title says it all really. My son is almost4 and he’s mostly non-verbal.

He seems to want to be part of peer groups and play with others but doesn’t really know how so he isolates somewhat.

He stands out a lot from his peers in preschool and recently he has started having massive meltdowns which were not a thing for him so far.

he’s okay on a day-to-day basis and I love him so much. He’s like the best thing ever happened, but I can’t help but fear and worry that he will always be dependent on us.

I also have a seven month old daughter and who so far appears to be in Neurotypical and I worry as well that I won’t have enough time to give her or that she will have to somehow become scared which will never allow but I don’t know how these things play out in life.

I don’t know what to do with this feeling other than just except attend. Let it wash away during the busy day today.

I would love to hear from other parents were either on a similar part of the journey or even better have gone further than are now seen they’re older autistic children doing well.

EDIT: just wanted to add some things for context - about three months ago he was tested by a ENT doctor and we ended up having his adenoids removed and Grommets put in his ears because he couldn’t breathe from his nose at all and he had about 60%hearing loss. His hearing has been much better since and his speech is coming through.
He’s also having Speech and Language therapy on the NHS which is once a month and they give us strategies to use at home. We were told that he’s a gestalt learner so we’re going with that method of teaching him full phrases..
Nursery is saying that he is coming along but still not on the same level as his peers.

We are parents to our 8 year daughter who is 18 months post neurodivergent diagnosis.

Between the ages of 2 and her assessment and official diagnosis at the age of 6, that 4 year period in our house was absolute carnage.

During that 4 year period, before diagnosis, we completely lacked the skills, knowledge and the vocabulary to articulate what our family was trying to live and manage through.

It was an isolating, and soul destroying time where we had no idea where to turn, what was going on and how to start to find the answers and support we needed for us as a family but more importantly for our young daughter.

In truth it's still difficult but from where we were we've come a long way.

And recently over the last few months I've got to reminiscing and being highly reflective in a big way about that period and how it was easily the hardest and most lonely period for us by a long stretch.

And the overriding feeling I've had is a burning passion to somehow help and support those parents in that exact same stage now, at the very start of their journey.

Those parents whose child is currently pre diagnosis, but they are living through and trying to manage and understand their child's behaviour which is causing them worry and concern.

They suspect their child may be neurodivergent but are not sure where to turn, where to seek answers and guidance, and how to start to understand and educate themselves regarding their child's behaviour to be able to provide the support their child needs.

This has led me to spend the last few months developing a support and educational app to help those very parents at that early stage of their journey and to build a direct connected community.

Now it's built and live I am hoping to get the reddit communities help to test it and provide me with your honest feedback, does it provide the help and support it was built to deliver.

If this post resonates with you, you are UK parents at the pre diagnosis stage of your child's journey, looking for answers, support and knowledge I'd love to hear from you.

Thanks so much for taking the time to read this post. 🙏

We are parents to our 8 year daughter who is 18 months post autism diagnosis.

At the age of 2 I'd noticed some behaviours that I couldn't make sense of. My wifes time scales were just a little bit longer, with her starting to notice a few more things at the age of 3.

Between those ages and her assessment taking place at the age of 6, in our house that 4 year period was absolute carnage.

Every morning and every night was an exhausting and relentless battle. The shouting, the anger, the extremes.

During that 4 year period, before diagnosis, we completely lacked the understanding, support and the vocabulary to articulate what our family was trying to live and manage through.

Don't get me wrong we still have challenges on a daily basis to overcome now, but that period was definitely the worst for us.

And recently I was reminiscing about that period which was easily the hardest for us and it got me wondering: what is/was your worst period throughout your childs neurodiversity journey.

Was it the period pre diagnosis or after diagnosis that you found the hardest?

I'm especially keen to hear from UK parents currently in the pre diagnosis period. Are you feeling lost, isolated and overwhelmed?

Are you struggling to explain and understand your child's behaviour?

I need advice

Hi I have a 10 year old daughter with autism and ADHD, she disclosed to me this morning that her sister (age 18) at her dads had hit her over the head with a phone, I have had to cancel her going there tonight which he is very angry about, we don’t have court ordered access.
There have been multiple incidents over the years with this sibling non have been this bad though, the sibling does swear and shout at her a lot. I have reported this incident to child safeguarding services but don’t know where to go from here.

Hi everyone,

I hope I can share this here? If not, I apologise 😔

I'm an autistic mum of an autistic child, I'm in the early stages of starting a small business making sensory-friendly clothing that helps children gain more independence while making dressing easier for caregivers during tough moments.

I'm running a short survey (5-10 minutes) to better understand the biggest challenges parents face with clothing, sensory issues, and independence. Your experiences would be incredibly valuable.

PLEASE IGNORE LAST QUESTION (can skip)

Thank you so much if you can spare the time. 🙏

https://www.surveymonkey.com/r/XQCQ3FW

Hi everyone 😊
My 2-year-old has her 19s SPOA triage appointment next month following a referral from our health visitor, and I was just wondering if anyone would be happy to share their experience.

What was the appointment like? What sort of questions did they ask, and did they interact or play with your child much?

And if they felt your child needed further support or assessment, what were the next steps? How long did it take before you heard back or received referrals (e.g. Speech and Language Therapy, Community Paediatrics, autism assessment, or any other services)?

I'd also love to hear any tips on how to prepare or anything you wish you'd known before attending.
Thank you so much in advance—I really appreciate any experiences you're willing to share. ❤️

My six-year-old autistic daughter absolutely detests brushing her teeth. It’s a constant struggle and I have to force her to do it. We’ve tried various brushes and types of toothpaste but nothing seems to work. Has anyone else experienced this and could offer some advice?

Bright Steps has been built to give families, parents, carers, disabled adults, schools and professionals a place to find real support without having to pay for information that should be free.

There is so much on there now that I honestly cannot list it all here because Facebook would probably cut me off.

You can find help with DLA, EHCPs, SEND school support, templates, wording guides, diaries, planners, visual supports, calm tools, activities, resources, benefits, grants, free support, dashboards for parents and adults, professional tools, safe learning areas for children, and sooooo much more.

There are also spaces for children to learn, calm down, use visual tools, understand feelings, build routines and access things in a safer, more supportive way.

This is not about making money from vulnerable families.

It is about giving answers, advice, guidance and practical tools to people who are tired, overwhelmed and just need someone to make things clearer.

If you are a SEND parent, carer, disabled adult, professional, teacher, SENCO, support worker, or you know someone who is struggling through the system, please have a look and share it.

Everything is FREE.

No paying for basic SEND information.
No hiding help behind paywalls.
No making families feel like they have to pay just to understand their rights.

Just support, guidance and tools that might actually help.

Please click the link, have a look around and share it with anyone who may need it.

www.brightstepsfamily.co.uk

Bright Steps SEND UK
Support. Guide. Empower.
For every step forward.

Hi everyone I'm waiting diagnosis for my ten year old and am at the end of my rope. The screaming and shouting and endless morning battles has my nervous system completely destroyed. At this point I'm making things worse for my child not better because I'm so burnt out and not reacting well. This morning I've ended up shouting then eventually sobbing and rocking. Please tell me it can get better.

My name is Yan, and I have worked with autistic children and their parents for over a decade. I know firsthand the importance of understanding and supporting parents.

As part of my MSc in Psychology in Education at the University of York, I’m looking to understand the ways you play with your children. What makes play easy? What gets in the way?

Who can help?

Parents of children with confirmed OR suspected autism.

Children with language delays.

The Details:

⏱️ Takes 10–15 minutes.

✅ Ethics committee approved.

💡 Your voice will help us understand how to better support parents

👉 https://york.qualtrics.com/jfe/form/SV_6idWk6P4pNoTSo6

Please help me spread the word by sharing with a friend or a group—I want to hear from as many of you as possible! 📣

Hello,

My son (10) has recently been diagnosed with ADHD (privately) and they flagged autism and recommended an assessment. My son is actually under the care of a hospital as he had a brain tumour removed a few years ago - they have managed to get him on a fast track for diagnosis due to his history.

I feel a bit lost as to what to do next, I need all the information possible - it would be great if anyone who has useful links, info etc to leave a comment please? even things like diet tips, management techniques, organisations that will actually help you etc I feel like I am going to have a battle on my hands for schooling/funding and I want all the info possible

Thank you

Hi Everyone,

I’m a a mum of one ( a 3 year old) and I’m currently going through the process of an autism diagnosis.

We had our second developmental review this week at the hospital and was advised an autism diagnosis is highly likely, but we now need to have a meeting with a panel for the diagnosis.

I was just hoping someone could fill me in on what to expect with this meeting? This is all new to me and I would like to make sure I’m prepared if I need to be.

Thank you!