Episode 71
Navigating the complex maze of health assessments for neurodevelopmental disorders can be daunting for any parent so our guests this week are here to guide us through it.
Jenny Hooper is CEO of The Evolving Mind with 39 years of experience working in SEND education and Dr Dolly Agrawal is a consultant paediatrician with 25+ years working in the NHS and specialism in neurodevelopmental diagnosis.
We talk about the difficulties of diagnosing neurodiversity (particularly in girls), why it is crucial, and why so many families are seeking private assessments. Across autism, ADHD and dyselxia, our guests take us through what to expect when your child is being assessed and how to spot red flags in private assessors.
The journey through the referral process can be fraught with frustration—but armed with our insights, you can anticipate potential roadblocks and ensure your child remains the centerpiece of any assessment. Dr. Dolly and Jenny impart invaluable advice for post-diagnosis support and navigating the educational system. If you're looking for actionable insights and empowerment, this conversation is tailored to light your path through the special education needs landscape.
Link to The Evolving Mind Clinic
www.sendparenting.com
Episode 71
Navigating the complex maze of health assessments for neurodevelopmental disorders can be daunting for any parent so our guests this week are here to guide us through it.
Jenny Hooper is CEO of The Evolving Mind with 39 years of experience working in SEND education and Dr Dolly Agrawal is a consultant paediatrician with 25+ years working in the NHS and specialism in neurodevelopmental diagnosis.
We talk about the difficulties of diagnosing neurodiversity (particularly in girls), why it is crucial, and why so many families are seeking private assessments. Across autism, ADHD and dyselxia, our guests take us through what to expect when your child is being assessed and how to spot red flags in private assessors.
The journey through the referral process can be fraught with frustration—but armed with our insights, you can anticipate potential roadblocks and ensure your child remains the centerpiece of any assessment. Dr. Dolly and Jenny impart invaluable advice for post-diagnosis support and navigating the educational system. If you're looking for actionable insights and empowerment, this conversation is tailored to light your path through the special education needs landscape.
Link to The Evolving Mind Clinic
www.sendparenting.com
Welcome to the Send Parenting podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, I'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade. In today's episode, we are going to do a deep dive into the topic of assessments for the diagnosis of autism and ADHD. Who can diagnose your child? What's the right pathway the NHS or privately and what should you expect in terms of the actual assessment and its different parts? We'll then explore the need for a diagnosis in terms of getting the right educational support for your child at school. Joining our discussion from the Evolving Mind Clinic in Ascot, which focuses on providing assessments alongside wraparound holistic care, is their consultant pediatrician Dr Dolly Agarwal, specializing in community child health, with over 25 years experience in the NHS, and Jenny Hooper, ceo and a principal education advisor, with over 39 years of experience in the field of education and special education needs. This podcast was incredibly informative and really took the guesswork and the confusion around what to expect in an assessment if you're looking for that diagnosis for your child of ADHD or autism. So welcome, jenny and Dr Dolly, to the SEND Parenting Podcast. It's an absolute pleasure to have you with us today.
Dr Olivia Kessel:I know that, as a parent, getting to the point where you're looking to get an assessment and a diagnosis is a journey in and of itself. And then you have to navigate getting an assessment and that's almost like opening Pandora's box, because the traditional routes of getting an assessment going through the NHS and CAMHS it's a system that's broken. It can be two to three years, which is a long time for a child and a parent. So more and more parents are now going privately and that's you know. How do you know who's the right assessor to go to? What qualifications should you be looking for, where should you go? And I know these are all things that you know when I went to take my daughter privately came up in my mind and from other listeners that I've had on the podcast. So I'm super pleased to have both of you experts here in the room today to really unpick this topic and really understand what it is to get an assessment and you know, answer all those questions that I have and my listeners have and then to also see how that gets applied to education.
Dr Olivia Kessel:So first let's start with you, dr Dolly. I'm calling you Dr Dolly because that's what your patients call you and I think it's lovely and it makes you really accessible. You're a consultant pediatrician and you're also a really strong advocate for children's rights, especially children with special education needs, and you are a perfect expert to actually explain to us what is a good assessment and who is a good assessor. So maybe we could start with what type of clinician provides a diagnosis for autism or ADHD or dyslexia. Are they the same?
Dr Dolly Agrawal:Let's start there. Well, first of all, I'd like to thank you for inviting us both to talk today. I'm really excited to be here. So, in order to answer the question about what type of assessor does these three assessments, it's easier to start off by talking about the process, and if we talk about the process, then we know who's involved in each step of the process. So I've worked in the NHS for 25 years.
Dr Dolly Agrawal:I'm now working private for exactly the reasons that you said the accessibility, the wait list, and if you think about what happens as a parent when you're concerned about a child so your child you might have noticed differences. You might be worried about a child so your child you might have noticed differences. You might be worried about some difficulties and you want to talk to someone. The first people that you go to are your GP or the SENCO in the nursery or the school, if they're not home educators, and you're asked for a referral. Now who does that referral go to?
Dr Dolly Agrawal:So that referral, if you're looking for an autism assessment or an ADHD assessment, that referral will go to either a community paediatrician. So community paediatrics is a big part of paediatrics and the paediatricians that work there are experts in child development. It's part of what they do and that's what I am. I'm a consultant in community paediatrics. The other pathway is they can go to child and family mental health services. So at the moment, part of the difficulty is there are two separate pathways in many boroughs, but actually the clinicians working in both settings are able to diagnose ADHD or autism, and then dyslexia is a totally different pathway.
Dr Olivia Kessel:So if you Could, I pause you there for one second, dr Dolly, because I you know that's super interesting that there's two different pathways, because you know, I hear of like the huge waiting lists for CAMHS, are there huge waiting lists for community pediatricians? Absolutely, it's the same issue.
Dr Dolly Agrawal:So Okay, it's the same issue.
Dr Dolly Agrawal:Okay, it's the same issue. I'll give you an example the borough that I've been working in in southeast London for five years as a consultant when I started the wait for an initial assessment so this is not the specialist ADHD or autism assessment, just the initial was six months post-COVID. It's now one year and that's just to see a doctor to tell someone what you are worried about, and then they get put in another wait list so that could be for an autism assessment and that's another one year, two years, three years, depending on where you work. Or the doctor might say we are not commissioned to do an ADHD assessment, we're going to refer to child and family mental health services.
Dr Olivia Kessel:So frustrating for families.
Dr Dolly Agrawal:And very frustrating for me as a clinician when I would see these children and know I know how to assess both things. But because we are not commissioned to assess ADHD, I now have to refer to child and Family Mental Health Services and this is part of what's effect. You know, this is what's happening and this is why people are going private. But in terms of the actual, your original question was what are the qualifications? So in community paediatrics, everyone who you will see should have been trained as a paediatrician, so that's a children's doctor. So they started off in medical school. They've done lots of years in hospitals seeing adults, then specialised in seeing children and then they've gone down the path of specialising in child development. And a consultant is somebody who is on the specialist registrar with the GMC, so the General Medical Council. So if you want to know who you are seeing as a specialist paediatrician, you can just go on the General Medical Council website and they should be registered as a specialist. Now, if we go down the community paediatric route, first, you'll get referred. The referral is triaged by a team and even at that point there will be parents listening to your podcast today who will be very frustrated because they receive a letter saying this referral has been rejected. Why does it get rejected? Because the right information wasn't there, or there was information there, but it was felt that it was more appropriate for a different service. So that's frustration number one.
Dr Dolly Agrawal:Then, if you get to the initial assessment which is another wait list of about a year, depending on where you live you will see. Hopefully you will see a pediatrician, but you might see a clinical nurse specialist because of the wait list we are. Now, you know other people are coming in and ideally that person should have expertise in child development, so that initial assessment can be done by a clinical nurse specialist or a paediatrician. Now, when you go private, you're much more likely to see a consultant in paediatrics. Private you're much more likely to see a consultant in paediatrics. But when you are going through the NHS route, you could see a clinical nurse specialist or a junior doctor or a consultant.
Dr Dolly Agrawal:Now, to be clear, junior doctors are very experienced. You know they've done years of paediatrics and they are being supervised, so there's nothing wrong with that. But it's just to make your you know the parents aware that there are differences. After that, if you're referred, if we take autism first, you'll then be referred for an autism assessment. And the autism assessment is a multidisciplinary assessment, so it's done by somebody who knows how to take an autism specific history and somebody who knows how to do an observation. So those people and the person who does the autism specific history should really be a consultant or a specialist doctor in child development, so again a community paediatrician, and the observation part can be done by a psychologist or it can be done by a speech and language therapist, someone who has an expertise in child development and has done training in the observation.
Dr Olivia Kessel:So the quality? And are they observed in the school? Are they observed at home? Well, that's a really good question.
Dr Dolly Agrawal:So, in terms of the autism assessment itself, we'll do autism, then we'll do ADHD, and and we can talk, yeah, overlap, and then we can talk about dyslexia.
Dr Olivia Kessel:So yeah, we're gonna, we're gonna, we're gonna download your brain, dr dolly absolutely go into the details.
Dr Dolly Agrawal:So, in terms of the autism assessment, you have the triage, then you have the initial assessment and what we're doing there is taking a full developmental history. So we're really going back right to the beginning, to when you were pregnant, because we know everything can affect a child's development. So it does feel a bit like we're being very nosy, but this is why we're asking all these questions. Then the autism assessment itself you have the doctor asking questions. The observation is done in a clinic and it's a play-based observation done by someone who is trained, so the child themselves will not realise they're being assessed or observed, hopefully. So there's different modules depending on the child's learning level, their language level, their age, and it's all very fun. So it's play-based. You're provided with toys and asked to make up a story. There's lots of conversations and all we're looking to see is does this child, is their pattern of behavior fitting with autism?
Dr Dolly Agrawal:Now, we would not just diagnose autism based on a history or observation in clinic, because we know children might behave differently in a clinic setting. So we want information from other settings that that child is in. So we gather information from the school. Usually most children are in a nursery or school setting. So we will send questionnaires to the nursery or school and ask them to tell us more about that child's behavior. What are they like at lunchtime, what are they like during maths, during PE? You know everything. And then we should have enough information to conclude.
Dr Dolly Agrawal:But if we don't that, so let's take an example. Let's use an example. There are lots of parents out there, probably listening to this podcast, who will have a child who's cognitively very able and in class is quiet, is compliant and is doing okay, and teachers really haven't noticed much of a difference. But that child leaves the school gates and has meltdowns, is is exhausted, is tired, is not functioning after school and there are subtle difficulties the school haven't yet noticed but will become more apparent as that child goes older, because that child's masking. So you may well get a school report that says we're not worried, but the parent is sitting there telling you what they're going through on a daily basis and you know what's happening.
Dr Olivia Kessel:And struggling to get the child to go to school as well. Exactly.
Dr Dolly Agrawal:Exactly, Olivia. So for those children we want to go into the school and do a school observation, but also we want information from other settings. So I saw a child the other week who, despite being the age for guides, is still in brownies, because the brownies have acknowledged she has difficulties. She won't cope in guides. They love her to bits. She's a delightful little girl. So they've kept her and they want to provide a report for us. And so really we should be gathering information from all sources and then putting that all together and then saying, yes, this pattern of behaviour fits with autism or not.
Dr Olivia Kessel:So it's a very thorough assessment.
Dr Dolly Agrawal:It should be a very thorough assessment absolutely.
Dr Olivia Kessel:And that's important, because sometimes that doesn't happen. And if a parent knows what they should expect, then your red flags can go up if that's not what you're getting.
Dr Dolly Agrawal:It empowers you, as a parent as well, to say well, I know what the process is. This is nice guidelines, so if you're not doing it, can you know this makes me anxious, so, so, so what? What do? How can we work together to make sure that my child receives the assessment that they need, and and?
Jenny Cooper:interesting if you have listeners who whose children are girls. Girls mask much better than boys and it can be much more complex in terms of us gathering the information from schools, often because not to upset any of your male podcast listeners, but girls are more efficient at communicating than boys generally, and so girls Luckily, most of my podcast listeners are women.
Dr Dolly Agrawal:So you're pretty safe there, Jenny.
Jenny Cooper:It's often more difficult to diagnose girls than it is boys. Yeah, in both.
Dr Olivia Kessel:Adhd and autism actually.
Dr Dolly Agrawal:Absolutely so, talking about ADHD. So what is the process and who should you see? So actually, the reason that I'm a real advocate for having one door for parents to go through is actually the initial process is the same. So you approach your GP health visitor, senco, or the SENCO may have approached you and say I want a referral. The referral will go to the consultant child and adolescent psychiatrist team. So the psychiatry team, if that is who does the assessments in your borough, or they will go to community paediatrics, if they are the people who do the assessments in your borough, then there's a triage.
Dr Dolly Agrawal:Many listeners on this podcast again will have received that very frustrating letter from CAMHS to say your referral has not been accepted because it does not meet threshold. If it does meet threshold, you then get an initial assessment. Questionnaires are sent out to the school, to parents, and then you have an assessment which should be at least two hours long and it again involves full history. So going all the way back to the beginning, the development, chatting to the child, chatting to the parent, and we want to understand what you're good at, what your strengths are, what your differences are any difficulties and differences are any difficulties and putting together all that information from school, the questionnaires and payment, and then concluding, and again, if you don't have enough information, same thing we want to go and observe that child in school.
Dr Olivia Kessel:And it's so interesting because I've talked to some listeners who've had assessments and have paid £1,800 for assessments where they don't even meet the child, they don't even talk to the child, they just talk to the parent.
Dr Olivia Kessel:And that's wrong and that's something I want to message. I really want to get out there. That is not how an assessment should happen for autism or ADHD. What you're explaining with both of those pathways is it is a really detailed, thorough evaluation of how that child is coping in different environments and through different assessments, and the child is at the center of it. You know, and it's important, it's not just talking to a parent.
Dr Dolly Agrawal:Absolutely, and that's a really good summary, olivia, and the red flags for me so are clinics where the child is not observed, the child is not seen, and also clinics where the whole assessment is done remotely. You cannot diagnose ADHD, autism or dyslexia over a video consultation. A video consultation might be part of the process. A video consultation might be part of the process. You know, since COVID, we've all embraced the technology, but you cannot diagnose a child purely remotely over video. So these are the kind of things that you know. I want to empower parents to ask these questions Are you going to see my child?
Dr Olivia Kessel:Am I going to come in to the clinic. Yeah, yeah, and it's important because you don't know these things as a parent, you're not equipped with this knowledge of what is right and what's not right, and so it's super powerful to hear this because, as we said, with those long waiting lists and getting those letters saying you haven't met threshold or you've done something wrong, and often a lot of us parents are neurodiverse, who have neurodiverse children we can't fill out forms and we tend to miss details, and so maybe we haven't done the right process. You know, and that's what's gotten us rejected.
Dr Dolly Agrawal:And so then that's where I wanted to come on to the next bit, the difference between private and NHS. In NHS, again, it's very borough specific, but many places will only accept a referral from the school. Now that means that the school have to buy in to the fact that the child has differences and they're very clearly outlined in the referral, and the school are advocating for your child, and schools are very good at this. But we also know that the system does not always work, especially that you've described your own experiences. Now the difference is in private clinic you can self-refer and there might be some NHS clinics out there where you can do that. But I'll describe our model.
Dr Dolly Agrawal:So you come in, you have an initial consultation with a special educational needs consultant, which is 30 minutes. Then that information goes to a multidisciplinary team. So the triage is not done by just a doctor or a nurse or a speech and language therapist, it's done by a team. So you will not get a letter saying there was not enough information, you haven't met threshold. What you will have is a conversation after the team have met to say this is the pathway we think your child would most benefit from, and often actually what you actually want first is a learning assessment with an educational psychologist. And this now addresses your dyslexia question.
Dr Dolly Agrawal:So how do we diagnose dyslexia? So dyslexia, ideally we shouldn't just be looking at the reading and writing and saying this child has dyslexia or not. We should be doing a full cognitive assessment Because actually we know there's a lot of overlap between anxiety, dyslexia, depression, adhd, asd, other things, with learning. So an educational psychologist will do the full cognitive thing. You'll get a proper cognitive profile with observations and as part of that it will say whether you have a dyslexia type of learning. So by the triage being done by a multidisciplinary team, we can come back to you and say, actually we think it would be most beneficial at this point for your child to see an educational psychologist. Let's get that done. Once we've got that profile, that might be enough at this point in time or we may have to go down other pathways. So that is what I think should be happening. So that is what I think should be happening, but obviously it can't always happen because of resources and how NHS teams are commissioned and things like that.
Dr Olivia Kessel:Yeah, it gives you know what is it. 30% of dyslexics have ADHD and ADHD have. 50% have learning difficulties, the commonest being dyslexia, also autism and ADHD. So it's very hard to say you know which when you're looking at the broader picture.
Dr Olivia Kessel:So it kind of gives you that broader vision to start out with and then also like so, if, if, then it's looking like adhd or autism. You know how do you know which? Is it personalized, which pathway you go down, or do you look kind of to both with children because there's so much overlap?
Dr Dolly Agrawal:our clinic we do both. We offer assessment for both, because why would you if it's looking like both? We know there's a big overlap and so then we would do both if that is what the parents and the child want. But if they feel that the possible autism is a bigger problem, they don't want to do both. That's also fine. And going back to how the NHS works, most you know, childhood adolescent, psychiatrists, psychologists, paediatricians, we're all trained to do both, but a lot of it is to do with how that service is commissioned.
Dr Olivia Kessel:And again, you know that just doesn't put the child at the centre of it. For me, that puts policy at the centre of it. You know which is? You know it's frustrating because I was lucky with the assessor who did my daughter's assessment. She specialized in girls with autism and I wasn't even thinking autism and she's like, no, we're going to. Actually we're going to rule that out as well, because you know she wanted to explore it both where I hadn't even been thinking of that, you know. So it's a there's a lot as a parent, you learn along that journey too, and getting the right people to support you, to help you make those right decisions alongside you, is really important, because how you're supported changes too then, I think, with those assessments. And then what about? You know? So we've talked now about dyslexia. Well, we haven't actually done the dyslexia route, but an educational psychologist is the one that yes, so with dyslexia, there are dyslexia.
Dr Dolly Agrawal:People can be trained to be a dyslexia assessor and look at reading and writing. However, as a clinician, so if I'm diagnosing, if I'm doing an autism assessment or an ADHD assessment, if I'm diagnosing, if I'm doing an autism assessment or an ADHD assessment, I want to know are this child's differences, difficulties, in keeping with their learning level? I want that learning profile. It's not necessary for every child, but it is for a group of children, and if all I get back is what they're reading and writing is like, that's not very helpful and it's not actually that helpful for the child either. So the reason for recommending the educational psychologist is because they have that deeper understanding of that child's learning and can do the full cognitive assessment, not just the reading and writing, but what are their problem-solving skills like? What are their listening skills like? What's their working memory like what's their understanding like and the nuances of it, because children are much more complex than can they read or write and are there difficulties within that?
Dr Olivia Kessel:yeah, uh and it it's uh, that they are much more complex than that. And then also also because, and you know, that gives you then the strategies that can actually be implemented in the school, and we're going to talk about that, you know, a bit later with Jenny, but, um, it's, it's so. It isn't just about reading and writing, there's so much more to it. And then there's also comorbidities, which we haven't talked about as well, because those can actually hide some other stuff. So you've got to kind of and when I say comorbidities, I'm talking like anxiety, depression, other factors or other things that are at play how do you weed those out in terms of the assessment process?
Dr Dolly Agrawal:So if you follow a thorough assessment process and we should be following NICE guidelines, so that's the National Institute of Clinical Excellence and we should be using diagnostic criteria, either ICD-11 or DSM-5. These are just diagnostic criteria. You don't need to and just to explain to people the two types there.
Dr Olivia Kessel:So basically the US, where obviously I've spent a lot of time and have this accent from they use the DSM and then the WHO or the World Health Organization uses the ICD and they get revised. I think the DSMs had five, the ICDs at what? 10?
Dr Dolly Agrawal:or 11, now 11, isn't it? It's 11 now, yes, yes.
Dr Olivia Kessel:And they keep reading and they kind of go out of sync in sync and they you know, and then you've got all of your assessment tools, which tend to use the DSM.
Dr Dolly Agrawal:Yes, you're right. So the algorithms. So for take ADHD, the assessment tools fit with DSM more. But this is why we would not base the diagnosis just on the tool and that's why you take a really thorough history, you do observations and you do the whole thing and that is how you get to the nuances of. And if you just look at ICD-10 and ICD-11, just for your listeners, the reason it's important that these things evolve is in ICD-10, to get a diagnosis, to fulfill the criteria for a diagnosis of autism, you had to have some kind of language loss of language, language delay and symptoms early onset, Whereas we know there's many children who mask, since you do not see these symptoms. Girls, yeah, high-functioning girls, but also boys. We know that it's not just girls. So ICD-11, there's been a criteria change and actually you don't need that delay and the symptoms don't need to be have been as visible in the early period. So it's evolving as we learn more about autism and ADHD, these criteria evolve.
Dr Olivia Kessel:And what's interesting is that then makes more people get assessed and diagnosed, which then makes it has a backlash of people thinking, oh, everyone's getting diagnosed now, but actually it's because of these a big reason why is because of these changing diagnostic criteria that we actually are able to pick up more on children that are struggling and get them the diagnosis and the support they need, not that we're over-diagnosing, and I think that's also a key point, because these changing criteria and there still needs to be an impairment.
Dr Dolly Agrawal:So you know, we always ask at the or you should always ask at the beginning of any assessment process why do you want the diagnosis? Because if you sort of identify with this pattern of behavior, but it's not a problem, you don't really need a diagnosis. But if there's an impairment, if it's causing difficulties, then that's so. You shouldn't, you wouldn't really be getting a diagnosis unless there's an impairment there.
Dr Olivia Kessel:Yeah, and you know, as a parent and as we've just highlighted, how difficult it is to get an assessment. You know, whether you go through the NHS route or you go through your private route, it's not easy, it's costly, either with time and rejections or with money. It's you know, it's a parent has got to really be trying to solve a problem before they go down this route. Is you know, and you know there's something in their gut that saying is not right that there is an impairment route? Is you know, and you know there's something in their gut that saying is not right that there is an impairment, and that's you know? I find, with every most parents I speak to, and I'm sure you do as well, that there is a very valid reason for why they are seeking to get an assessment.
Dr Dolly Agrawal:And then you were asking about comorbidities. I think that's how we digress. So when we were, when we do the assessment, part of the assessment is asking the questions about comorbidities, and we know anxiety is a big part of adhd and autism, because these, you know, especially with adhd, children may have been struggling with low self-esteem for years and so and and that then makes you very anxious because every time you try something, you are anxious and worried that you're not going to get it right, because that's just what everyone has told you. So we are looking for these things. We should be doing a mental health screen. There are questionnaires that can support that if you're worried, such as the SDQ or the RCADs for anxiety. So we have access to questionnaires that can support that if you're worried, such as the SDQ or the RCADs for anxiety. So we have access to questionnaires. But just really good questions, observations. You know that in itself should help to unpick the comorbidities.
Dr Olivia Kessel:Yeah, and, as you say, because it can be caused by that not feeling good enough, not being enough in the school system and at home too. It can be challenging at home as well. And, as we talk about why parents go for an assessment, and there are many reasons why, like for me, it wasn't education-based, it was parenting and home-based. That took me. We were struggling so much at home and I needed help. I mean, I even said like I don't care what her diagnosis is, I just need help. I can't go on, you know, I need to know what to do next. And actually, through her diagnosis of ADHD, it provided me with a scaffolding to understand where she was with her working memory, where she was age-wise, youwise, executive function, age versus chronological age, and it helped me to parent her better and the school as well.
Dr Olivia Kessel:So there's multifactorial reasons why you go as a parent, but one of the, I think, probably the major reasons is because they're looking for more support in education or they're looking to get support for their EHCP. And, jenny, I know you've been very quiet waiting while Dr Dolly and I have been chatting here but unpicking now what that assessment and diagnosis means in education. You have over 39 years of experience in this sector, helping lots of kids and parents. And one of the key questions that my listeners ask is okay, if I go privately and I get an assessment and I've, you know, I use all of Dr Dolly's tools and make sure that I'm going to a good clinic, I'm getting the right kind of um pathway. Are they valid in in schools? Are they valid for my EHCP? You know there has been pushback but no, they're not.
Jenny Cooper:So I would love to get your thoughts and your wisdom on this to health and education authorities if they followed the appropriate guidelines, such as those from NICE, as Dr Olley has just been talking about. These assessments should be with established tools and conducted by qualified professionals. Those assessments that are online assessments that have not seen children, local authorities are much more reluctant to take on board, and so ensuring that the guidelines have been followed for the assessments that your, your child is is having, are really really important. The quality of the assessment is crucial for its recognition, especially if it's for applications for education, health and care plans. So I mean that's really the key Local authorities. Because of the pressure that CAMHS are under local authorities, they have no choice really.
Jenny Cooper:The same code of practice, which is the statutory guidance that came into force in 2014, underlines the responsibilities of schools and local authorities in identifying and supporting children with special educational needs, and the guidance stresses the importance of early identification of needs and the provision that is appropriate to support those needs.
Jenny Cooper:And if the local authority has unnecessary delays or health have unnecessary delays, that goes against the code of practice, and it also highlights the rights of parents to request that assessment for their child to obtain an EHCP.
Jenny Cooper:So the involvement of parents and children and young people in the decision-making process is emphasised all the way through the go-to-practice, and therefore parents need to be strong and forceful in their determination to have that assessment started and to submit their reports. Uh, if it, you know, if there's clear evidence that you're on a two, three, you know, year waiting list, um, you know, unfortunately. Uh, one of the things I don't like about the system is it creates a sense of the haves and the have-nots, and for those parents that are able to afford those private assessments, they must be accepted by their local authorities. Unfortunately, for many parents that isn't an option, and so encouraging schools to be supportive in supportive of need not diagnosis, is really important, and I think that might be a discussion for for another day, where we we kind of look at that in terms of those parents that don't have the financial support to be able to to to pay for a private assessment, how do they get their, their child, noticed and seen and supported in school?
Dr Olivia Kessel:Yeah, I think that's a whole nother podcast, jenny, because it's so key to getting support in the here and now and not waiting for these assessments. And even when you get a diagnosis, it's just the start of a journey. Do you know what I mean? You still need to put all the support in school in place, and people have said this before on my podcast. If you've seen one person with autism, you've seen one person with autism. So you need to put the right structure. It's got to be a personalized program within education for that child. So I will definitely take you up on having another podcast on that one. But in your experience with EHGPs too, though, you also don't need to have necessarily a diagnosis. It can help support your case, but you can have like we were talking with you Dr Dolly about the EdSight can suggest that this child might look like they have an autism profile or this child might look like they have an ADHD profile. That can be sufficient. My understanding is to put need in the EHDP. Is that correct?
Jenny Cooper:Supporting education can be accessed, with or without a diagnosis, through the school SEND support system, and I think that that's really an important piece of information for your listeners. Your first port of call is your SENCO in your school and acknowledging with the effectiveness of that support and if school-based interventions are not sufficient to meet a child's needs, that is when you then may go for the formalised EHCP assessment. And in terms of that, all your listeners need to do is to send a one-line email to a local authority which says I require my child to be assessed, and it is literally as simple as that. You can make it more complex, you can put all the detail you like in your email, but in terms of starting a statutory process, that is all. A parent, a school or anybody else who's related to that young person or comes into the realms of that young person can make that call to write to the local authority and get that.
Jenny Cooper:But it is not about having a diagnosis. It's about having a learning need, and many, many people who receive a diagnosis of autism do not require an education, health and care plan. They can function quite brilliantly within the education system. So it is not a prerequisite for an EHCP. With an EHCP, you're looking at a need which is creating a learning difficulty which means that young person is not able to function as well as their peers within that school setting. So that's what you're looking for, and it's not about being three years behind or two years behind or having this or having that. It's about saying this young person requires support over and above what the school can provide. And that is the little piece of law which is, uh, significant within the code of practice. And it's actually a very basic question does, does the child require more support than the school can give? And if they do, then the answer is yes.
Dr Olivia Kessel:And therefore we should be carrying out an education, health and care assessment, and I think that's you know, it's really key there that because a lot of listeners and even I was I fell down this path too. I thought the SENCO had to do it and we moved schools during COVID and then the next school said, oh well, we have to have her for at least a year before we can comment on it. So I mean, we wasted like about two years and that was before getting into the system which was going to miss every single deadline that they had. So it was a horrific duration of time.
Jenny Cooper:I think that's quite interesting, Olivia, what you're saying there about moving schools and having evidence. I think it's important for parents to collect their evidence themselves. I'm sure you learn pretty quickly as a parent of a young person with SEN to keep everything literally every document, every file, literally every document, every file.
Dr Olivia Kessel:But what? My misconception was that I needed to have that person that SENCO apply on behalf of my daughter, so they had to know her. So that was the bit that, and I'm not. Luckily, I've now found out I'm not alone there. There are lots of people who have had this misconception, the application can be done by a parent.
Jenny Cooper:What is tricky is that second part of the of the test. Yeah, do do you require support over and above what the school can provide? Well, if your child has not been in the school for very long, they can't actually answer that question because they've not, the child has not been there for them to observe, etc. That is why the supporting documents from your previous school or you know, any IEPs sorry, individual education plans lots of schools call them different things all of those things, all of those bits of paper that come in the book bag that you know as parents, we discard because we're trying to put the dinner at the same time.
Dr Olivia Kessel:You hope it comes in the book bag.
Jenny Cooper:If it ever comes back, exactly, keep all of them, scan them, put them in your computer. Keep them because they are evidence of longevity, of how something has happened.
Dr Olivia Kessel:Yeah, and it empowers you then, as a parent, to be able to also transition from one school to another as well, so that they know where they're starting from with your child.
Dr Dolly Agrawal:I also just wanted to come in as an assessor. We should be requesting information from the old school. So in the last few weeks I've seen at least two children who had significant problems in their old school, who had significant problems in their old school, and both cases when we requested information, they were more than happy to send us the SEND support plan and everything else that they were worried about and that really helped with the assessment. So it's fine to go back to the old school, as long as parents consent.
Dr Olivia Kessel:Yeah, versus starting from like ground zero again in a new school. Yeah.
Jenny Cooper:That's very, I mean, with schools, yeah, versus starting from like ground zero again in a new school. Yeah, put their finger on why their child is potentially misbehaving. Not engaging is unwell attendance, and actually one of the first things parents do is actually move schools, because I think that's the issue. And then they move schools and they move, and actually very slowly, that realisation of actually no, and I always think about this when I think about you know whether, whether you want to go for an assessment for your child, it's just often something you can't quite put your finger on.
Jenny Cooper:There's something not that doesn't fit right. Um, and particularly for difficult, I think, for the parents that have got only children because they've got no comparison and actually when they have the comparison, they go oh my goodness, my first child did this, but now my second child is doing this, and sometimes that can be tricky. That can also be tricky for parents, parents that want to have that coping mechanism of okay, I want to fix it, I want to fix it, and they just don't know where to go to start with.
Dr Olivia Kessel:Yeah, and there's one thing that comes loud and clear on this podcast is trust your gut. No-transcript. Moms know when something is wrong with their child, even if they, you know it could even be an illness and clinicians might not pick up on it. Child, even if they, you know it could even be an illness and clinicians might not pick up on it. But the moms, 99.9% of the time, they know when something?
Dr Dolly Agrawal:Oh no, I'm absolutely. It's so if I want to audit this because when people have come, I've seen hundreds, thousands of children over the years and the first question I ask is you know, what are you worried about? And you do this whole assessment process. Sometimes it takes 13, 14 hours of professional and parent time. You go back to the very first thing that they said and that is the diagnosis, and you know all we've done is confirm what the parents always known so my child can't concentrate and then you do this whole assessment. I agree with you.
Dr Olivia Kessel:Yes, it's a, you know it's powerful. I think it'll be powerful for all the moms out there. You know, trust yourself, trust your gut, you know your child better than any professional, and then the professionals will help you to, to, to get the right assessment, the right diagnosis and then the right support in school. Now I want to give you both a big thank you, Um, but I'd like to also end, as I like to, at the end of the podcast is to ask what three tips, kind of uh, I'll give three to each of you, because I think you, you both, have such a wonderful um experience under your belt. What top three tips would you give Dr Dolly in terms of a parent who's thinking about getting an assessment to take away from them after listening to this podcast?
Dr Dolly Agrawal:Well, I'm going to steal one from you, which is listen to your gut. And number two is because we know there are really long waiting lists and sometimes your child will end up on multiple waiting lists unless you go down the private route, which is not open to everybody. Then I would say start the process early, because from the day that you are worried, it could be up to three, four years till the assessment process is complete. So it's okay to go to a clinic and then for someone to say, actually your child is fine or the need is not that great, that's fine. It's even okay for you to be on a wait list and then cancel the appointment, that's fine. I've never bothered when that happens. But just you know, start the process early and also talk to people. So use parent support groups, talk to your friends, talk to the health visitor, talk to your GP.
Dr Olivia Kessel:So sometimes just talking to people and listen to podcasts like this so it's true, though, because I mean, that's why I started this podcast. I've told you this is a, this is a passion project for me, but I wish that I could have learned this information and actually I continue to learn so much information through you know, through these podcasts, because it's it's it's power to have that knowledge and then you know to. It teaches you to trust yourself and it teaches you that actually you can reach out to people for support. So those are great top three tips, jenny on to you.
Jenny Cooper:What top three tips do you have? I think, in terms of assessment, it's important to think about why. Why is it important to you? Important to think about why, why is it important to you, why will it be important to your child and is it necessary for the future journey of your young person? I think that's quite important because it's not a necessary item for an education, health and care brand, if that's a route that you feel that you're going to be taking. But also it moves sort of more onto my second tip, which is, even with a diagnosis, it is the support that continues post-diagnosis which is the most important.
Jenny Cooper:Having a diagnosis is not going to support your child. What's going to support your child? What's going to support your child is the holistic therapeutic support that will come once you've explored an assessment. Having said that, early assessment is really important because the earlier you can get the assessment, the more then the therapeutic support will guide your child through that education journey and out into a fulfilled career life. You know, all we want for our parents, for our children, is for them to be happy and contented and feel a sense of self-worth within the world that we're in. So I'm passionate, as I know, Dr Dolly is in that holistic support that comes along with an assessment but also can be given by clinics without an assessment, by clinics. Without an assessment, you know you can say I'm not really worried about the assessment. I feel my child has these needs. What holistic elements can we put in place?
Jenny Cooper:And the last thing is is work with your SENCOs. Okay, work collaboratively with them. Collaboratively with them, continue to be resilient. And if you need a SEND advocate, they are really helpful in pushing things forward. I work with a lot of parents as an advocate and what I find is parents just go, I'm just exhausted. I just need someone to guide me through and we can support with that advocacy. And I don't think it's. I don't think it's about it can be very limited in involvement, but actually just keeping you on the right path as a parent. It can be very helpful. So, yes, think about why holistic support and work collaboratively with your SENCO, if you can.
Dr Olivia Kessel:Those are six great top tips from both of you, and I really want to thank you for your time today. I know that this is going to be incredibly helpful for a lot of listeners and I wish I could have listened to it. You know when I was going through this a couple of years ago, so thank you so much.
Jenny Cooper:Thank you, thank you so much, thank you so much, thank you.
Dr Dolly Agrawal:Thank you so much.
Dr Olivia Kessel:Thank you. Thank you for listening. Send Parenting Try. Please visit us at wwwsendparentingcom. I really would love for all of you to sign up for my email list. There are some really exciting things in the pipeline that I would love to be able to share with you. Wishing you and your family a happy week ahead, thank you.