Denied A Diagnosis & An Education

Having studied Autism via a free government course where you learn about the 'rights' every person has to receive the same opportunities. It surprises me that the same government supports a process of doing things that denies these very human rights.

This blog is dedicated for the most part to our daughter's post-16 journey from school to college, a journey someone told me today has been unethical! That word landed hard with me alongside another Mother messaging me with tears in her eyes as she read a previous blog I wrote and the relatability to her own daughters experience.

It's not the case in every family but we have travelled the system and its processes twice. You'd think we'd have mastered it the first time round but truth is communicating an individuals needs to the system is an incredible battle of justification especially when we don't fit into boxes.

Both of our daughters needs though given in part the same diagnosis are very very different.

You can read our eldest's journey in a previous blog: The Lonely Path Of Autism, Anxiety, & Self-Harm. Our middle child has had to try to understand why she's not at college right now at 16 years old and, while we communicate as best we can we know that she must have all sorts of thoughts travelling around her mind and as such is masking her feelings in a much more heightened way.

This daughter was born with a heart condition and it was confirmed very quickly that she also has Downs Syndrome. Her early journey was intense and wow does she have some grit, bravery, and determination - qualities we are thankful for every day. Her journey was so moving that I wrote a book about the experience - You can buy a copy on Amazon - Coco Braveheart is her name.

Pre-16

Having survived open heart surgery, a procedure that has lasted 15.5 years with no further surgery our daughter has lived in the world with Downs Syndrome - a condition that for her impacts learning and development delays. I remember vividly seeing qualities about her that I wanted to get to know more deeply. I said to her Pedeatrician I believe she has Autism. At the time we were told no way and that she saw no signs. I stopped talking about it with this professional but I knew deep down there was something about her personality and interactions with others that was unique. A few years later we moved to a different county and at the first new Pedeatrician visit the doctor frantically looked through the notes seeking something that wasn't there and when she looked up said 'You do know your daughter is Autistic don't you?' My first reaction was to laugh - a reaction the doctor had not experienced from a parent before. It was a laugh of relief 'Yes' I said and within months she had a confirmed diagnosis and we believe just in time to affect her education choices positively.

Mainstream

Our daughter started out in a mainstream school right up to Year 4 about 8 years old before she felt her own differences and became acutely aware of being given different work and building friendships was hard as you had to keep up with her beautiful conversations filled with a little bit of the now, alot of the past, and a bountiful supply of make believe and fairytales. She had had an Educational Health Care Plan (EHCP) in place since starting out in Primary but the addition of Autism opened doors in understanding her needs better and as such an evolving EHCP.

Specials Needs Education

I remember when we first started looking around at potential special schools she was politely turned away for being too able! But, then we found a special school in more ways than one! They met her as an individual and supported her from Primary to Secondary education - she was an asset to the community and at the leaving do it was acknowledged that when she first arrived it was hard to know how she was feeling yet nowadays she brings a smile to so many!

Bumps in Secondary Education

On the whole her journey was smooth and we saw her grow every year. In the last two years of Secondary Education she struggled to set boundaries in friendships and this led to her being controlled. Despite always being no trouble to this school when she hit these bumps she was supported every step of the way. As such she built strong and enjoyable friendships. She even had a group of friends she was going to move onto college with.

Choosing a college

As you travel through special education it narrows with choice and as such can mean young people being away from home or families having to move to get the right place for their young person. Thankfully not only had we found the right place, it was actually closer to home! It was a smaller and calmer college, had wellbeing areas created in the garden, delivered a school-like full time education, and she'd be with friends she had worked so hard to build. We didn't provide the council with any other choice as this was the one and we pitched for it. One of the bumps in Secondary Education came while we were awaiting the councils decision. Our daughter had experienced a second controlling friendship outside of school that raised a heightened safeguarding issue in her new potential college. This person was 2 years ahead of her in age. Our daughter was receiving counselling because of it and with her counsellor had created strategies to cope. Thinking she'd only see this person in passing. Every other student at school received confirmation of their college place. Our daughter was told 10 days after the promised deadline despite living the closest but thankfully she got into her chosen college.

Red flag at college

After willing the other family to speak to the college about the situation which they did so much later than we had hoped we began liaising with the college only to learn that they had been put in the same tutor group. Our daughter would have to face this person every morning and afternoon in tutor time and in-person plus, multiple lessons in the timetable. Her school and counsellor had not prepared for this and put forward their concerns to the college. I attended a meeting after a welcome session to new parents, a session I sat in with a deep angst for all the things she may not do if they didn't resolve the scenario. That meeting was so unexpected for the way it was filled with frustration at us for not saying sooner despite the reasons being very personal and fragile. We were told no changes could be made at this late stage, it was inconvenient to do so. I remember feeling in shock, numb to what was being said. Subsequent emails and phone calls were shocking as they could not see that our daughter would experience heightened anxiety every single day. There was no empathy from the Deputy Head, a little came from the wellbeing team but the final decision sat with the head teaching staff.

My final attempt asked for them to consider what if this same issue had happened in the Summer holidays would they still expect her to still face the person every day. I also shared a piece of language from our daughter with them too where she said 'I felt safe at school. I don't feel safe at college'. The reply was 'if you'd told us sooner we would have been able to resolve it'. We decided that this was not the right setting for our daughter as her safeguarding needs would not be met. They promptly accepted the withdrawal and made no attempt to resolve such a simple request of different tutor groups.

Finding a new college

At first it was overwhelming. To our knowledge everywhere else was either too big, offered a part-time timetable, was too far away, or had no known friends attending them. Then one day another parent shared links to two places we had not heard of. In part because she had discovered them by word of mouth and was disappointed not to of known about them herself. We visited them both and the first one we could see may be wonderful in a couple of years for our daughter not right for now. The other was further away but still commutable and we walked into such warmth and welcome that is so hard to come by. A smaller establishment but, with every area our daughter wants to thrive in from cooking to music to beauty catered for. I met with the headteacher and the support was such a relief. I then took our daughter to visit and she communicated both immediately and two days later that she would like to start college here. As parents of a special needs child/young person/adult we try to be their voice and hope that we get it right but, when you have clear communication as our daughter was able to give then you do everything you can to communicate in the system for them. Then we started the process of changing colleges with the council.

Changing the named college with the council (the dates below are the council responses and mine are in bold italics)

July 8th 2025 started the process by emailing our daughters caseworker.

July 17th chased response for this urgent request.

July 22nd first response and from a new caseworker - I will need to send a formal consultation to the college to confirm they can meet your daughters needs and offer her a place, as well as to obtain detailed costings, as this will need to go to a Local Authority panel for consideration as it is an independent specialist placement.

Remember, we've done the work of finding the right place. The college has space and is happy to welcome our daughter having seen her plan and can meet her needs. We have also already shared what happened only to be met a week later with this email.

July 30th I have spoken with my line manager about your request and they requested I gather some more information from you to better understand your daughter's circumstances. We named a college in March for your daughter's Year 12 placement. Presumably a transition has taken place. Can you please elaborate on your concerns regarding this placement and why you feel it is no longer appropriate for her? I am just a bit concerned about trying to secure a placement for September at this late stage. I understand the original college is quite close to your home address, whereas this new one is some distance away. If you could give me a bit more detail with regard to your concerns about current placement and the change of position in school preference that would be helpful.

Despite already expressing the sensitive nature of concerns I have to go into more detail which I do as discreetly as I can. I also say that we will continue to prioritise our daughters mental health and support her in what she chooses.

August 5th Thank you for your email and for providing me with that information – that is very helpful to understand the situation. I will speak with my line manager about this and get back to you once I have more information. Please note I am on annual leave from tomorrow until the 15^th, but I will aim to respond to you as soon as possible upon my return.

Another 6 days pass and annual leave looms. 15 days later we receive this news!

August 20th Thank you for your patience whilst I spoke to my line manager about this. I have received a formal consultation response from new college setting which confirms that they can meet your daughter's needs and have space to admit her. They have also provided the relevant costings which I require to take this request forward for consideration.

 Please note that as part of this process I am also required to consult with two other colleges as the local mainstream settings. This is part of the standard Local Authority process and must be done whenever a specialist placement is requested at post-16 level. Once I receive their formal consultation responses, I am required to take this request to a Local Authority panel for consideration. Please note that as the colleges are still closed it is unlikely I will get a response from them before they return in September. Therefore, I will not be able to confirm whether the Local Authority agree to a placement at your chosen college or not before the start of term in September, but please be assured that I am actively working on this case and will do my best to get a decision as soon as possible.

Two things to note here they are choosing to waste time and money seeking information from two mainstream settings - our daughter has not been in a mainstream setting for 8 years! The other thing is process. Despite our chosen college being ready to go! On August 27th I hear about an interim provision service through another SEN Mum and ask them for a referral. This will of course cost them more while they follow their unnecessary process!

September 1st Our temporary offer whilst we await a decision on college placement would be the Interim Provision Service [IPS] – I will make a referral to them today and I will put forward the details below regarding your preferences to see whether this is something they can commission through their service.

I express our worries about tax credit and child benefit payments as our daughter does not have a college place and we need to keep things up to date. I send this on September 9th.

September 11th Yes, the LA have agreed to maintain your daughters plan so she will be engaging in further study – we are just waiting to determine which setting this will be. I believe IPS are still processing the request and should be in touch with you shortly about what is available.

I send multiple messages to the credit team with no response except only to stop our payments. So far we have lost £1500 that we had not prepared not to receive. Plus, my self-employed work is reduced as I am home schooling our daughter while supporting our eldest in a new college simultaneously.

I chase the council on 23rd & 30th September.

September 30th I am unfortunately still waiting for responses from the mainstream settings. I have chased several times but still no response. I have booked time later this week to discuss your daughter with my line manager to see if there is a way I can push this case forward without their responses. I will let you know once I have more information.

I cease the 'opportunity' to write the script for the conversation with his line manager stating -

Could you reiterate to your line manager the following points please.

1) This new college have met our daughter. Our daughter has visited, and we all agree it's the right setting for her to thrive at this time. The college are able to welcome her.

2) Our daughter has had a very stressful year and the reason she could not go to the named college was a big safeguarding issue. She was the victim and yet is the one being punished with no college place.

3) Our daughter needs a smaller setting to increase her feeling of safety and confidence at this present time. The mainstream colleges are too big for her plus she needs a fuller timetable and structure back in her life as close to school as possible.

4) This tick box process set out by the council of checking with other colleges is wasting time and money for the council, if we get the interim provision this will cost even more money! We have lost over £1000 in family credits as we could not name a college in the system and so it is assumed that she is not in education. We are homeschooling - this affects our work and income and our daughter is missing out on social and learning time which is crucial for her long term independence.

5) Our daughter has a human right to have access to the education she wants to have and yet she is being denied the place she wants to go.

Please make the human choice so that Coco can get settled.

October 1st Thank you for this – I will raise the contents of your email with my manager and get back to you as soon as possible.

I respond on the same day saying - and we will appeal if the council try to offer another college but the lapse in time and other points made make this a human choice and we hope not to have to put ourselves nor our daughter through such a process. We would like to hear back by the end of this week. Our daughter is also Autistic and is now on loop saying 'when do I go to college?' Thank you for being our voice in the process but too much time is passing by now.

Dad also steps in with another email to the council - Thank you for your previous reply to Claire regarding your intention to escalate the absence of our daughter's education provision.

I am writing at the close of yet another week to stress, once again, the urgency of this matter. While we appreciate that processes and procedures must be followed, our overriding concern is the protection of our daughter's rights and the increasingly serious impact this delay is having on her mental health. We must ask that this matter is resolved as a matter of priority and without further delay.

October 3rd I wanted to update you following my meeting with my line manager as promised.

 As part of the phase transfer, we fulfilled our statutory obligations and named a post-16 setting for your daughter which was also parental preference. We understand your reasons for not wanting her to attend this college, however, due to the time we were informed of this decision, consulting with alternative options was delayed due to the summer break. There is a process to follow when a young person wishes to change the name of the education setting in section I of their EHC plan. This is not a tick box exercise, this is to ensure that all appropriate options are considered. The college request is not the closest education setting to your home address and in addition there is a cost implication which needs to be considered by the Local Authority. We have referred to our Interim Provision Service to ensure she has access to an education whilst we secure another placement for her. I do appreciate that this is not a quick process, but please be assured that I am working on your daughter’s case and trying to move this forward as quickly as possible. I will be phoning the colleges on Monday morning to highlight that we require their responses urgently as we have a young person who is waiting for clarity on their education going forward. I will then take this to the Local Authority panel for consideration and will update you as soon as the LA have made their decision.

Notice the tone, a defensive response as it is a tick box if our daughter is not ever going to the two colleges they are taking the time and money to look into. They also talk about late notice. Meanwhile the new college is ready to go and answering their emails in the school holidays as they respect the urgency of our daughters needs. Plus, despite the IPS referral we've not had an assessment by the provision and have been chasing that in the background too! I do ask that our judgement and our daughter's judgement need to be respected in what has been a difficult time. We are prepared to drive her to and from to keep costs lower for the council as well.

October 10th I have agreement to submit your request for the new college to the Local Authority placement panel for consideration. Please be assured that I have included all your parental views with this request, so the decision makers are aware of your views. I am unsure when this case will be heard but I will keep you updated with any developments and will, of course, let you know as soon as a decision has been made. Hopefully we can get this sorted for your daughter as soon as possible. 

16th October It's been over 3 months since starting the process and still we are awaiting for both the IPS offering and college agreement and hence why it has been described as unethical.

The importance of special needs friendships

Those of you that know you will understand what I'm about to say deeply. Making friends when you have special needs is an incredibly hard process. Navigating the needs of each other in every interaction takes huge effort. Most children with special needs miss out on birthday invitations and gatherings with peers and so the education setting may often be the only place for social interaction. Our daughter has had to part with really good friends in this process and while the families are amazing and we do see each other once every 2 months this is miles apart from seeing each other 5 days a week. Our daughter has a whole new set of friends to make alongside new teaching staff, a new area, and a new routine. We feel the council have hugely underestimated the mental health aspect that this has had on our daughter as they have delayed her start date for what has been described as unethical.

What have we been up to during this process?

We have been maintaining dialogue with our daughter around healthy friendships and have focused on her wellbeing needs. Thankfully she loves Aromatherapy too and so has been creating blends that balance her. She does meditation with her Dad before bed which is an amazing routine.

We listen to her requests on what she'd like to learn and do. Art creativity is her preference and so we signed her up to an inclusive arts studio that is helping her to achieve her Silver Arts Award. Plus, we colour together in the library and cafes and have been going to a pottery studio to paint too. We write, read, and do Maths too!

Another curveball

If you know us well you'll know our life is squiggly but it seems the universe thinks we can cope! Coco is navigating a fractured knee with months long waitlists (a whole other blog!) alongside all this and has meant her absolute passion for dancing has been hindered. Yet, despite this she is progressing so well and has built up new adapted dance moves! I told you she is brave, has grit, and determination! - our Coco Braveheart!