[Speaker 2] (0:00 – 5:36)
Hello, this is Anna Kennedy. We’re talking all things autism and the time just seems to be flying by lately. I just seem to be like two minutes ago I was doing the last interview just trying to pack so much in and now my son Angelo is on his summer holidays for a couple of weeks because they only get two weeks in the summer.

So I’m trying to juggle work and I’m trying to take Angelo out. So we went to the lovely Burnham beaches this morning. So if you live in the Buckinghamshire area, it’s a lovely park and it’s a nature reserve and it’s called Burnham beaches.

It’s got lovely little cafeteria there and really, really relaxing beautiful walks. So if you’re in that area, it’s a great place to go with your child or adult on the spectrum. So I have been doing all sorts.

So last week I was actually reading a story to children. I’ve never done that before. Obviously my own sons but I was reading it online on YouTube for Spectropolis and I was reading a beautiful book called Eyes of Me by John Roberts and it’s got beautiful illustrations by Hannah Rounding and I actually did a review of this book and it was John has created a beautiful book in prose of his amazing daughter.

The illustrations are captivating and I love the way it highlights the world through the eyes of a young person on the autism spectrum. So John who actually wrote the book he works in IT. He lives in Swansea with his wife and Sarah and his daughter Kaya who’s published the first book.

This was the very first book in 2017 and he’s written two more books since then. So his new book will be coming out soon. So if you check him out, it’s John Roberts.

You can actually pick up the book from GraphX spelled G-R-A-F-F-E-G and also Amazon. So check it out. A really, really beautifully illustrated book.

Again, just to remind you of the book that one of my childhood champions has written from Atiyah to here. She started writing the book quite a few years ago and then during lockdown she picked up the book again and she finished it and it’s been published. It’s called From Atiyah to Here.

It’s an autism family’s journey and Dawn Avery’s talking about her son Aston who has autism and also medical difficulties and also Aston is one of my people that we work together on. All Things Autism and Essex which is on Gateway Radio and we do that every month, once a month, for two hours where we have three guests and if you’re interested in listening to it, it’s Gateway Radio 97.8 FM. If you look on the blog you’ll see past guests and lots of different information on there where we’ve chatted and we’re also preparing for the next one.

Just to remind you about the Autism Hero Awards only a few weeks ago and the nominations are just rolling in. We have had so many and the judges are going to have their work cut out for them. They’re going to be able to choose only three out of all the nominations for each category.

There’s 12 different categories just to remind you who our judges are. They’re David Grant MBE. We’ve got Russ Kay from Women’s Radio and Men’s Radio.

We have Kelly Croft who is a mum with a young man on the spectrum and she is from Born Anxious where I’m an ambassador for for clothing which are disability friendly. Kasey Ainsworth and one of our patrons Savannah Kennedy online also a parent to a young man on the spectrum and also her husband’s got Asperger’s Syndrome. Dr. Pam Spur is a psychologist award-winning radio presenter as well for women’s radio and also a long-time supporter of our charity. Detective Chief Inspector Dionne Brown who’s got two children on the spectrum. Johnny Jenkins who’s an editor and political editor of Gateway Radio and also BBC Radio Live 5 and then Joe Luck who is also one of our ambassadors diagnosed on the autism spectrum and world kickbox champion three times over. So if you want to check out all the updates that are happening on the charity website we’re updating every week it’s www.annaKennedyonline.com.

We talk about the training, the workshops, any legal advice that you may need and also we are talking about our exciting events that are coming up. Autism’s got Talent the Roadshow at St Ives and Autism’s got Talent celebrating 10 years with 20 performers at the Mermaid Theatre in October the 16th and then the last event is obviously the Autism Hero Awards which I’ve just been talking about and they will be happening later in November. So my guest today is Asma.

So Asma studied and trained at University College London as a speech and language therapist. She’s worked with various NHS and third sector organisations across the country for over 20 years. Asma feels privileged to have worked with children and young people with a range of speech and language and communication needs and parents and carers and professionals that work to support them.

She has specialised in early years bilingualism and SEMH. She has led a number of teams and is passionate about providing high quality evidence-based interventions that provide real results. So Asma, thank you for joining me today.

Oh my absolute pleasure. Oh thank you. So before we go into talking about autism, talking about speech and language, talking about chatterbook, let’s find out who is Asma.

Where are you from Asma? Just tell me a little bit about your background.

[Speaker 1] (5:37 – 6:34)
Yeah so my name is Asma and I grew up was born and bred in Luton down south and went on to train as a speech and language therapist in London and come from a very big, vibrant family and moved to Yorkshire in about, I believe it was 2008. So for me, speech and language therapy wasn’t something that I always wanted to do. I actually was very unsure about what I wanted to do as a college and it just came to me from lots of different sources as a career, as a good career option for me and when I started researching it I was just amazed at how broad and the range of subjects it covered and it felt like it was a great option for me and never looked back really.

[Speaker 2] (6:35 – 6:41)
So it’s interesting being a speech and language therapist, how do they go about it and what do you need, what do you need to do?

[Speaker 1] (6:42 – 7:45)
Yeah so you have to go to university and do a degree, you can do it at a master’s level or at an undergrad level and I believe next year the option of training as an apprentice will also be a route to go into speech therapy. So my second college I did three A-thebles in psychology, human biology and communication. Just again, at that point those were just the subjects I was really, really interested in but many people have studied English or history, tend to come from a language type background or a psychology.

It’s quite broad, it is quite broad and science again is another area. Many people come to speech therapy having already done an undergrad, it’s usually a language-based or an arts-based, funnily enough. So you start creative, so there you go.

But it’s very, very broad and it’s a career that would appeal to many.

[Speaker 2] (7:46 – 7:56)
Okay so you’ve set up Chatterbug which is speech and language therapy and social enterprise. So tell me a little bit about why did you set up Chatterbug and where did the name come from?

[Speaker 1] (7:57 – 10:27)
Sure, okay that’s going back a bit. So I moved, as I explained, I moved to Yorkshire around 2008, 2007-2008, having worked in London and I became and in my move I, so I’d reached quite a senior position within the NHS when I was working down south and when I moved that there weren’t any jobs available so I had to take whatever was available and it was starting right at the beginning and actually it was it was very much the making of me because it gave me a different view into the world of newly qualified speech and language therapists coming into the profession and the amount of support they need. But at the same time I was just, I also became pregnant, I became a mum, I was diagnosed with cancer myself so I went from being somebody who was at the forefront of delivering patient care to becoming a patient myself and then going to appointments and waiting for results and delays in information being received and I think it really made me aware of the patient journey and the importance of communicating information and how hard it is for parents and yourself as a patient to wait and to have delays in results and information and how scary that process is and at that time there was a massive waiting list for even to see a speech language therapist.

I think it was anything from about 18 months and I just felt it was just too long and the service that I was working for at the time had, we call them DNA rates so do not attend so a lot of patients weren’t turning up for their appointments and I think one of the clinics I worked in had an 80% DNA rate so obviously the attendance is huge yeah and we weren’t allowed to go out to see children in schools for this particular clinic I was working in so we had to be quite creative about where we saw children and families because speech therapy unfortunately it’s not just a one-off appointment it is quite a long commitment and sometimes it’s good before you can even understand what’s going on and obviously that’s that’s that’s a lot of time and effort on everybody’s part

[Speaker 2] (10:27 – 10:56)
yeah that’s quite a few parents who were saying speech and language therapy but my child can talk so why do they need speaking like that’s the first thing I thought and even like I’m going to say extended family would say because I remember when Patrick started having it he was saying well he doesn’t need it he can speak really well he’s really articulate I said it’s not that so could you explain his parents are listening in and the child’s just been diagnosed and why they feel the need for speech therapy.

[Speaker 1] (10:57 – 12:13)
Yeah so um so thinking specifically about so speech language therapy encompasses speech so that’s how the sounds that we make language so that’s all around understanding language but also being able to use words and sentences and also the social element of it so pragmatics and social skills so you might be able to talk and have lots of language and have have a good vocabulary but but then being able to use all of that language appropriately and have a two-way interaction and a conversation with someone and that’s where you might start communication isn’t it’s not just me talking it’s about it’s a two-way process it’s about having a conversation it’s about the eye contact and the body language that comes with it in fact a big chunk of our communication is actually non-verbal so I find self-saying to parents quite often you know 80 percent of our assessment is what the child isn’t saying it’s about how the child is interacting with you it’s how they’re moving between activities so it’s their attention it’s their focus so it’s a lot more complicated than just being able to say words and sentences.

[Speaker 2] (12:14 – 12:43)
Yeah so you’ve had a transition of being a professional to becoming a parent of a child in the north some spectrum conditions I believe she’s eight recently been diagnosed so can you tell me a little bit because people as they know I’m really quite passionate about early intervention about getting the diagnosis as quickly as possible and as you know it’s very much a postcode lottery and parents are waiting five years to get a diagnosis and I’ve known parents that have waited a lot longer but it seems to be on average it’s between three and five years before a child diagnosis.

[Speaker 1] (12:44 – 16:56)
You know it’s I think one of the things that professionals need to understand and don’t always appreciate that it’s it’s a journey um for me with my background and having been involved in autism diagnosis it was still a journey admittedly a short journey but still still a journey and I think we’ve always known that um so she’s our middle middle child is a mayor we’ve always known she’s she’s different and she thinks to me but as a speech language therapist and as a as a family that’s very aware of communication we’d already made loads of adaptations for her naturally from a very young age without even realizing we’d made those adapts um adaptions and um but even then it it came to a point where without that diagnosis it was really hard to explain to a mayor why she was the way she was and why she thought the way she thought um and I think again I was a little bit torn and torn and I was anxious about being judged because for me obviously I know about about autism and I am a speech language therapist and her you know obviously her school will be aware that I’m a speech language therapist and a mayor doesn’t have any on the surface speech and language difficulty she’s very articulate she has a fantastic vocabulary she’s very bright but it was all the social elements that she was really struggling with and the understanding of language so coincidentally we were actually um as an organization Chatterbug does all things around speech and language therapy and we were aware of the length of time parents were having to wait for an autism diagnosis and were very often negative impact that was having on a lot of these children so we decided about just before lockdown so about 18 months ago we’ve decided that we wanted to launch our own um autism assessment panel okay and we started um reaching out to professionals because it’s a multi-disciplinary diagnosis yeah and a pediatrician a psychologist and a speech language therapist that’s on the team and as we were having conversations with the team about setting up this clinic I started to become more and more aware of some of difficulties and barriers that a mayor was was experiencing particularly at school um you know so she was having meltdowns um yes she was very very well behaved but she was coming out of school she was she was very very anxious I could see it all over her body um and it was only when I sat down actually it was a conversation with her and she said to me mama I don’t really like eyes I don’t really like eye contact and I think it was that conversation because she’s very self-aware of her you know limitations and her needs it made me think about everything it made me think about some of her early days and when she started talking and about how she interacts about some of the adaptations we made and I then had a conversation with Sophie who is our autism specialist and she said look asthma if you were a parent and you came to me with all of these features I would say you definitely need to refer yeah um and we referred a mayor to our obviously we are very very fortunate in that we had this panel and a mayor was the first um patient that went through this panel or client uh that went through this panel okay um and that’s how it eight months even though we had everything yeah I know that that journey is a lot longer for many many parents because it’s that acceptance phase you know understand and you know society will tell you society still doesn’t understand autism particularly autism in girls you know conversations with parents and family members who will say oh how are daughters like that why are sons like that but actually they don’t really understand the subtle difficulties um sometimes children with

[Speaker 2] (16:56 – 17:14)
autism can have how did you feel after the diagnosis was confirmed was it like you already knew or was it a bit of a shock or do you know I was going to ask you don’t mind sorry as a speech language therapist as a professional do you think you look out for things more because

[Speaker 1] (17:14 – 20:47)
of your profession um so that that’s a really good question actually and I think that was probably one of the reasons that there was a bit of a delay because I was questioning myself because I was very aware that I am a professional and turning off that professional bottom was really really hard you know because I was constantly second guessing myself I was I was challenging myself am I overthinking this because I’m a speech language therapist yeah um so so so it is actually you think it’s easier but it’s not and the way I’ve approached my career I’ve always listened to parents because the the books tell us one thing the theory is one thing but you have to listen to the parents the parents are the experts and I remember coming to us with all sorts of theories about why they felt their child had a stammer or their child might be autistic and I’ve always kept an open mind and I think that’s the key that’s my that would be my advice to any professional um established or new is always keep and keep an open mind um you know what what we are what we are there as speech language therapists to do is make explicit what people know implicitly implicitly I knew deep down I already knew that Amaya probably was autistic so when I got that diagnosis it was it was a relief it was it was almost closure because I I was so anxious and worried about was I wrong what was I you know because I was a professional yeah have I got wrong have I but I know that parents who aren’t professionals also feel the same sense of relief and when they finally get that diagnosis it’s just knowing that you’re not imagining things yeah it’s welcomed um why do you think girls um hardest to diagnose in your opinion so girls the presentation of girls with autism is is is more subtle um the intellectually able girls of all of them have better social integration despite still having social communication issues so the honest idea to be making friends making relationships and getting on with with others but it’s the challenges and the constant turmoil that they’re facing internal toward turmoil that you don’t necessarily see in fact most most girls are diagnosed with autism are diagnosed either in early teens or adulthood and then they initially present with mental health difficulties um which wasn’t any different for Amaya because the reason why I started thinking this needs more attention was because she was really anxious at school she was crying you know that perfectionism nature in her meant that she whenever even though she was higher ability the the teachers were them giving her activities that she didn’t have any anchor no explanation and that was really stressing her out so even though they do have social difficulties and issues around friendships it just presents very differently very subtly and the other thing is that they have far fewer repetitive and ritualistic behaviors so with Amaya we always we always gave her 10-15 minute head start of going to bed because we used to call them Amaya have you done all your bedtime rituals now we were very aware that she had these rituals but we never really associated them with autism until until obviously um she was you know we started thinking about a diagnosis

[Speaker 2] (20:47 – 20:52)
so what’s also you’re talking about if you don’t mind me asking Nikki no no not at all

[Speaker 1] (20:52 – 22:37)
so she likes um she likes to fill her water bottle up in a very particular way and it needs it out um three times um and then she needs to swirl her water about and it needs to be poured in a certain way and then needs to be placed in um on her bedside cabinet in a certain way and then she has a part of her ritual where it’s a little rhyme that she’s made up um so her big sister has to say something and then she says something and then a big sister has to repeat this a different line and then she’s and then she goes to sleep so she’s had that from a very very young age um pretty much since she started sleeping in her own bed okay she’s a good sleeper um yes and no um again those two phases and and i know again that’s another challenge that a have children who are autistic also face but i think for me i feel so blessed that a mayor will come and try and work out why she’s having these challenges and she’ll come and discuss them with me so recently she’ll come up because she obviously spends time thinking about it and one of her theories is that she sleeps better in the winter nights because it’s darker so yeah yeah and a lot of people do so she said what i need is blackout lines she also needs to go to bed at a certain time and anything later will start triggering her anxieties and worries okay and you know and her anxieties and worries can be anything from a fire to worrying about going to university she’s only eight um i was going to say you were talking

[Speaker 2] (22:37 – 23:03)
about anxieties obviously we’ve all been through um the last 18 months i think or is it two years i can’t even remember now an anxious time if you like because of everything that’s been going on with lockdown and all these different restrictions and easements and then restrictions again how has that impacted your family and also your daughter’s behavior so i know it’s been a

[Speaker 1] (23:03 – 25:21)
time for many people but for us as a family we own we can only see the positives and and i think that’s just us as a nature and it gave us time because amaya was only diagnosed this year yeah and it was and this conversation about eye contact only took place during lockdown okay and it’s because we had time to stop and think and what i noticed is that i kept losing my child and what i didn’t realize is i lost her every time school term started and actually she turned into this person that went into this shell and during lockdown we were at home so it really gave me an opportunity to get to know her and see her and almost get to know her as a person and then when she went to school it highlighted the difficulties even more um and her levels of anxiety were a lot higher because she’d obviously had this stint at home and for a while school tried to convince me it was because she’d been at home and all children are feeling more anxious actually i think for me it was putting all of that information together and although a lot of children were feeling anxious amaya’s anxiety was above and beyond other because children are not quite adaptable but children who are on the spectrum are not as adaptable um definitely a key feature so lockdown definitely gave us um positives because it helped us to take a step back and really think about what was going on but we were able to establish a structure and routine at home and not everybody has the luxury of doing that we were able to um completely work from home both my husband and i so there was always someone someone someone at home and had she not had that i think she would have really really struggled she had a big sister at home who was able to provide that structure and routine and if she hadn’t had that i don’t think she would have been able to cope as well she’d initially the schoolwork she was having meltdowns every day because it was all online i’m just quite a few more struggling and also because parents were

[Speaker 2] (25:21 – 25:30)
struggling you know trying to you know keep house trying to work from home trying exactly children so how how is that impacting on your business as well as well as looking out for

[Speaker 1] (25:30 – 27:52)
your daughter yes so it it’s been it’s been hard i and i think i’d be lying if i hadn’t said it it has it has been hard and there were i think four days i will remember forever as being four of my darkest days because it felt absolutely overwhelming thinking about so we have a team of about 50 staff thinking about 50 people a business and then thinking about these children with very very bespoke needs and i and i and i and i have three children and um my eldest daughter also has some medical needs as well so it’s about you feeling completely torn wanting to make sure that you’re able to meet everybody else’s needs yeah before the needs yeah um but the way we got got through it is we compromised and we lowered we had to lower our standards so on a normal day i would always aim for a 10 and a half but i had to accept i was going to do um and and thinking about the bigger picture because actually your child’s mental health and happiness is paramount and what i really didn’t want what i see all the time is the impact um all of this stress can that can have long term on a child’s mental health and well-being and for me that was the thing that i really wanted to protect um so it meant that if the school work didn’t get done the school work just didn’t get done it meant didn’t get done the washing didn’t get done something had to go yeah and we had to compromise and that’s the way we got through it um i understand your daughter amir is there with you is she comfortable speaking on the radio with me um now this is going to this is going to make you laugh but i said so i may uh tell me i’m going with the questions that she said so one of the things mama that i find really really difficult is when people ask me questions so we’re absolutely going to put for her um in you know to take her out of her comfort zone but um she really wants to do this

[Speaker 2] (27:52 – 28:25)
so i will just grab her two seconds okay thank you so um we have got asthma who’s now going to um ask amir if she’d like she feels comfortable talking on the radio with me has recently been diagnosed we can hear some effects sound effects in the background we’re making some sound effects

[Speaker 1] (28:25 – 28:31)
just to lighten the mood and amir is here we’re announcing her her entry

[Speaker 2] (28:32 – 28:48)
can you hear me yeah oh thank you so much for joining me today so i only answer what you feel comfortable answering me amir so how do you feel about being diagnosed autistic well

[Speaker 1] (28:51 – 29:07)
i feel um okay you can say what you said to me it’s fine how do you feel about being

[Speaker 2] (29:07 – 29:53)
diagnosed autism um i feel you feel happy about it um i actually don’t know how i feel about it okay that’s fine so um tell me a little bit about what you find difficult at school if you don’t um what i find difficult in school is sometimes communicating to people okay so is this with the the classroom friends that you have yeah and how about teachers

[Speaker 1] (29:54 – 30:18)
teachers not as much okay it’s really interesting one of the things that’s really interesting actually i’ll just come in there that amir’s always really struggled with and i’m not sure if other parents do is um starting to communicate with the more casual staff so lunchtime staff or break time staff okay she’s always struggled with those relationships because it’s not as structured

[Speaker 2] (30:18 – 31:38)
yeah well that’s saying a lot of children in the playground that’s where we found that a lot of bullying because they were finding it difficult to socialize so back to mares um so amir tell me a little bit about which subjects you like at school well but it’s one subject that i really like but people don’t really like it and it’s maths i love maths oh wow so you must be good at maths in yeah oh i know um someone who’s really good at maths and she um was always told that she would never um do anything in maths and now she’s um in america she’s 18 years old and she’s one of my charity champions and she’s um at harvard university um doing maths and physics and lots of other exciting stuff that she finds so always choose things that you feel that you want to do because if you’re passionate about something something will definitely happen for you so um can you um tell me a little bit about um is there anything you’d like people to know about yourself or about um how you feel um what would you like people to know you said that

[Speaker 1] (31:38 – 31:59)
you’d like people to know about autism yeah i like people to know about autism because if they meet somebody who’s autistic um they might not understand them because um because they think differently and they might they might say something that they don’t really understand

[Speaker 2] (32:00 – 32:26)
um to an autistic person and they’ll get confused probably okay so if you want to give some advice to somebody that who’s chatting to you and how they should be with you um is there any advice you’d like to share even with people that are listening in how about accept to you for who you

[Speaker 1] (32:26 – 32:38)
are how what advice could you give to someone who maybe has never met somebody who’s autistic

[Speaker 2] (32:50 – 32:57)
yeah that’s okay don’t worry don’t worry it’s fine um want to talk about things you like to do

[Speaker 1] (33:01 – 33:25)
well yeah what would you like to do we say at the moment um go down to the beach and find one all the rocks that they have and rocks and crocheting is a new thing that you’ve discovered yeah crocheting and sewing uh and origami oh yeah we have lots of origami in our house

[Speaker 2] (33:27 – 34:53)
so how do you get on with your sister um good you do things together yeah we do good good oh well thank you very much as mayor for a mayor sorry for talking to me um i really appreciate so i believe you’re eight years old yeah mate and what are your name um i’m slate when will you be i’ll be nine like um next march okay i’m i’m falling march as well mine’s march the 12th what’s yours just a march all right okay cool um so thank you very much for taking the time out to talk to me so is it okay if i talk to your mom again now yeah all right thank you take care of yourself so um oh what a lovely young lady um so as merc do you want to talk a little bit more about chatter blog because i was i was looking on the website and um you also support people obviously who are autistic um who talk about augmentive and alternative communication you’ve talked about developmental language disorder selective music mutism and stammering so um so this these particular conditions so is is this where you offer your services or is it diagnosed what is it what is it that you do no

[Speaker 1] (34:53 – 37:49)
so we work with all young uh children and young people we’re actually by the nhs and local authorities as well but a lot of buying our speech therapy services and um parents pay for uh private sessions as well um we we provide assessments and um therapy intervention uh we also deliver a whole range of training programs as well um on some specialist areas but also therapy strategies that um parents and um professionals can use to work with the other thing about these these conditions is that um an autism is that a lot of these conditions present in a very similar way so our our role is to try and tease out the different elements um and identify children that would depending on what what their presentation is what what will be the best diagnosis quite a lot of children end up with no diagnosis um it’s just that they have a language disorder and what we do is we look at where their difficulties lie and we always work with the presenting symptoms sorry but we work we work on the areas that they’re struggling with and we set goals around what it is that they want to achieve so whether it’s they want clearer speech or they want to be better communicators um and we we use a holistic model and we work with anyone else that’s in their um environment so we work with their school work with their parents um we work with the whole age range we have clients all the way up to 25 i’m just gonna ask the oldest so it’s 25 25 but we are exploring um an adult services so keep a lookout for that but at the moment most of our experiences is um with children and young people um scm age social emotional mental health um is is a very interesting area because a lot of children are misdiagnosed or not diagnosed and then they end up in being caught up in the youth justice system so we do around the country we work with a number of um services that are working particularly with children that are part of the youth justice system or have come in contact with the youth justice system and our role is to work with them to try and understand if there is an underlying speech language need okay um the statistics around um young people in um uh in prison with a speech language difficulty that was undiagnosed is shocking it’s in some young offenders institutes it’s in the 80s 80 percent

[Speaker 2] (37:49 – 38:31)
have some kind of underlying yeah i’ve been working with um the youth um services uh prison services in one particular prison so i would be interested actually in that area of yours and and be interested maybe if you could write something for me um for that but we can talk about that a little bit later on a personal level um they think um my son angelo um as a college that that he may have how do you pronounce it is it dysphagia oh yeah dysphagia and so on me yeah so so for people listening in that again might be like my son that they feel that you might need an assessment with that what what happened and how would you assess a young person

[Speaker 1] (38:31 – 39:57)
or an adult for dysphagia yeah so again it’s a very very specialist area and speech language members do additional training to become dysphagia qualified in the uk um but they would assess their needs based on a full case history so they would ask them about um you know textures that they eat and able to handle how they swallow um they’ll ask them about other symptoms around their general health um you know a speech therapist can refer on was for a video fluoroscopy which is basically an x-ray to to show us how a person is is handling food and how they’re swallowing um so yeah so it’s quite complex and again we work very closely with um other professionals like a pediatrician or um a physiotherapist or occupational therapist to create a bespoke plan um that’s part of our nhs service we do have a dystasia dystasia therapist okay um but i would always say that if you have concerns about dystasia um definitely go and speak to a medical practitioner um you can stuff um to your local speech language therapy service but um it’s it’s an area that you do want to get seen quite quickly and dystasia services are generally the turnaround time is quite good there aren’t long with your back it can happen in

[Speaker 2] (39:57 – 40:17)
someone’s health okay thank you that um so if you had to give some advice to somebody who’s considering getting their child diagnosed now that you have hand signs now that you know um obviously things are different for you what advice would you give to parents that might be listening that think oh i’m not quite sure if my child might be on the spectrum um so what advice

[Speaker 1] (40:17 – 42:44)
would you give i would say both as a parent as and as a professional the earlier you know the better because your child won’t dramatically change overnight but it could change your life um children aren’t i mean there are difficult children of course there are most children there is an underlying reason why they are the way they are and if you are finding it really really hard go and speak to a practitioner but but remember things like autism and the impact on language difficulties is still very very much misunderstood even by professionals unfortunately okay so if there is something more going on with your child unfortunately you do have to fight and don’t take no for an answer get your child seen get your feel rest assured you are the expert as a parent you will always be the expert you will look out and you will know your story and your journey um so i would say for us as a family having a diagnosis has really helped us prepare other people for except maya it’s not about changing her it’s about giving her that insight into why she is the way she is and helping her siblings understand why she is the way she is so my eldest daughter and say sometimes say so is that the mayor’s autism or is that her just being difficult because she’s still ultimately an eight-year-old child yeah so she will want to stay up late and push the boundaries as will any other child but under the context really helps everyone except that person the way they are and unfortunately society still has a long way to go to just accept people for the way they are because essentially that’s what we need um is just people to just accept that people have their own preferences for how they want to interact to communicate but we’re not there yet a diagnosis really helps others accept and understand why you are the way you are with your child and why your child is the way your child is because they can’t adapt

[Speaker 2] (42:44 – 43:09)
others can adapt for them so talk to me about a speech and language therapy assessment so you’ve got a parent who thinks their son or daughter may be on the spectrum so they need to have a speech and language therapy assessment could you talk through the types of things that you would be assessing what would you be looking at you know um for children at various

[Speaker 1] (43:09 – 48:06)
different age levels i suppose yeah absolutely so communication is one of the main areas of experience by all children young people on the autistic spectrum and as a speech and language therapist we look at um all aspects of the child’s or young person’s communication so we look at um so we’ll look at their development we will look at um their early years and whether they hit their developmental milestones um we’ll look at early pregnancy we’ll look at the family setup because as i said um there are many other um conditions or syndromes that present very very similarly um specific to language we would look at um the expressive language so that that’s um their vocabulary the types of words they’re using whether they’re able to put words together into a sentence um whether those sentences make sense and then their receptive language or their comprehension is whether they understand language so as you could tell with a mayor um you when you ask her some questions i rephrase them because they’re changing in the sentence even though she knows the words the meaning of those words almost change the meaning of that entire sentence for right um so we would look at and and um uh why questions and how questions are a lot harder for children and young people on the autistic spectrum than who what because they’re quite concrete so we’d be looking at this to understand language and then we’ll look at how they interact socially how they interact on a one-to-one but also more importantly how they interact with their PA group um or in an environment or or even a familiar environment but a busy environment so observing them in school or nursery or college or wherever it is that they go would also get their non-verbal features so their facial expressions have a huge gesture and body language so with a mayor and a lot of children who are on the spectrum there is very little facial expression so a mayor has something called a fixed facial expression and fortunately for my facial expression is this beautiful smile so she always has a smile plastered on her face and in fact when she was very young i remember parents saying to me oh she’s orgy what do you do to her um so um that’s just perfect facial expression um and how they get their needs met so how do they ask for things how do they um have basic needs met like going to the toilet and hunger so that’s particularly because are they pointing at things are they sharing things and how are they using their attention that’s an area that we would look at and that’s very telling for young children so we would use all information that’s just the speech and language assessment and then for an autism assessment the pediatrician would do their own assessment so they would look at some of the developmental um cases but they would also look at some of the physical features so um it’s quite common that children who are autistic also have dyspraxia and a mayor has dyspraxia and albeit very very mild and and that’s all to do with coordinating her hands and legs um and then a psychologist will also look at their understanding of the world in more depth and their cognitive skills and abilities so you can see it’s quite a complex diagnosis process which is why it takes so long i was just going to say how long does it take and how many assessments are a part of this whole package so for our service we would um have the speech and language therapy assessment which takes about two and a half hours and the pediatrician’s appointment takes about an hour and then depending on the information gathered they might want to do an observation session in school which takes about an hour so it can take up to day if it was all done back to back if you know what i mean and then meet to discuss um all the information gathered and that can take an hour half an hour to an hour to discuss all their findings and reach reach an agreement whether they where they feel that child or young person meets the criteria for an autism diagnosis and then there’s an appointment which takes an hour or so to deliver the news to the child and young person and their families as well so that’s just a different process so you know you know you’re looking at a couple of days there but within within our system that can be done quite quickly within the NHS you can see that can take quite a quite a long time

[Speaker 2] (48:08 – 48:17)
definitely um so are you preparing your daughter now uh because obviously it’s only a couple of weeks now before they go back to school how does she feel about going back to school and um

[Speaker 1] (48:17 – 50:04)
what are you doing yeah so she’s very nervous because it’s a change um because she’s going going to the next year she’s going to be year four it’s going to be a new teacher um transitions this year have been more difficult for school um they didn’t get the chance to spend usually what they would do is have a day in their class with their teacher but yeah they haven’t this year so we’re talking about it and um an added step that we’ve taken this year as a family which we didn’t do before um is we’re looking at the vocabulary that might come up in year four okay because her her biggest thing for a mayor is is understanding some of that vocabulary which is very very literal so we get more of a head start because key stage two is a game changer for children it all it goes from being quite straightforward to becoming very complex in terms of what they need to understand but also what they need to produce so work around preparing her for the language of the classroom and then um i’m closer to the time we’ll be talking to her about her routine her school routine and what it’ll look like um so yeah the more you can do to but again i know this is a luxury it’s because we have inside information and being being parents but working in the profession um so we are very very fortunate i know a lot of families won’t even know where to go for that information yeah um so um i found um the school run a very very useful um for accessing information about curriculum and about what’s coming up in the curriculum okay that’s personally but there are lots of information out there um so yeah that’s

[Speaker 2] (50:04 – 50:16)
that’s how we’ve prepared so again so again if people want to check out your website and any social media handles where they can follow what you do um how can they find you um yes

[Speaker 1] (50:16 – 51:19)
um actually just before i move on to that visual timetable so a mayor doesn’t need a visual timetable we’ve talked through creating some kind of a visual timetable um maybe beneficial for you as a family um so i are um social media we’re on twitter instagram um facebook linkedin you name it we’re on it and it’s at chatterbug slt okay so slt speech and language therapy okay and our website is um www.chatter hyphen bug.com so we are on social media as i say it has been a little bit quiet over the summer um as the offices and staff have been taking a march needed break yeah and we are quite active so you know please do do get in touch via our social media um or just via email you can email office at chatter hyphen bug.com thank you so we’re talking

[Speaker 2] (51:19 – 51:45)
about what do you do for your own mental health and well-being so what do you do to relax because obviously you’re busy looking after your family looking after your business you know juggling many hats so what do you do before lockdown let’s talk about what you did before lockdown because obviously during lockdown everything changed so a lot of people couldn’t do what they normally did so what you did before what you did during and what you’re doing now

[Speaker 1] (51:46 – 54:55)
so before lockdown i’ll be honest with you i didn’t give it much thought about well-being and my own health i just took it for granted that i would always be okay okay and obviously during lockdown life changed for everybody and um i mentioned that my eldest daughter also has some medical needs she was actually diagnosed with her medical needs during lockdown as well okay and again feeling this overwhelming pressure of having to deal with everybody’s and for me i think it was a conversation that i had with somebody a nutritionalist about a year ago but it all came back to me during lockdown and i thought i need to if i want to have to people in my own circle i need to start by looking after myself yeah so i set myself a very powerful goal something that i’ve been challenging uh found channel for a few years now and i set myself a weight loss and fitness goal okay so um i had a big birthday in september and then start i thought right this is going to be the next decade and um set on a journey to lose um i have now lost six stones wow so for me i decided to set myself food goals and exercise goals and that’s obviously had a massive impact on my own physical world health every morning at least three or four times a week i set myself i set my alarm and i go for a walk in the morning and i always do i always aim to do my 10 000 steps yeah so i’ve i basically the way i’ve tackled is i’ve set myself very selfish personal goals which aren’t selfish i say very selfish because i mean it’s all about me those goals are just me but actually if i don’t work on myself then i don’t have that energy and that drive to look after the people that are important to me um so um yeah so for me it’s been focusing on my physical goal and my and my health my healthy eating goal which is it in six stone wow how did she do that what did you do so do you know what the answer is um fiber i the fiber you can eat at everything i just opt my fiber intake and if you up your fiber intake you opt your vegetable intake and obviously some things have to go out the window so i’ve reduced some of my carb intake to reflect to increase intake so that that’s what worked for me but actually physically thinking about what i was eating was was probably the because prior to to lockdown it was skipping meals it was eating whatever you could eat um it was relying on you know sugar to get you through the day because you’re so busy yeah all people were bad

[Speaker 2] (54:57 – 55:04)
yeah yeah yeah baking wonderful cakes and biscuits whatever people were trying all these

[Speaker 1] (55:04 – 55:15)
because obviously bread yeah so like the focus so i used all of that energy to to teach myself how

[Speaker 2] (55:15 – 55:21)
to cook vegetables nicely so i couldn’t eat so did your whole family join in with you too so

[Speaker 1] (55:21 – 56:06)
absolutely yeah all of them and that’s the only way you can do it it has to be when you live in a family it has to be a family goal i couldn’t be cooking um for everybody um obviously you have to take into considerations a mayor’s a mayor’s very specific needs but again was quite fortunate in that she did well because we talked about why we were doing it and what it would be for all of us and again uh you know there were days where i had them all up um seven o’clock in the morning going for family walks in the park when it was quiet i bet they loved you do you know what i have to say my five-year-old did ask me mama don’t do those early walks

[Speaker 2] (56:06 – 56:24)
anymore so i don’t know what you think though oh dear but it’s all it’s all good stuff sounds all very positive and i’m so pleased that you have lost the weight are you well now because you mentioned at the beginning that you had cancer is that all gone now yeah cancer i have been

[Speaker 1] (56:24 – 57:20)
i have i have reached council milestone so i was diagnosed actually when i was pregnant with my first child so she is 12 and i’ve been i finished my treatment when she was about two okay so i’ve been cancer-free um obviously something that i need to need to keep an eye on and again even more important to have a very healthy healthy lifestyle and health and well-being so much on the agenda for us the family all of the time because it’s i feel i feel like we’re working a very very fine line and if we go the other way too much the other way we could easily um lose control everything that we’ve achieved as a family over the last um 18 months and we’ve just had a four four four day break in scotland eating lots of fish and chips and ice cream um i like scotland it’s absolutely beautiful yeah but everybody knew that after our break they knew vegetables were back on

[Speaker 2] (57:20 – 59:06)
the vegetables were back you’ve got to have a treat you’ve got to treat yourself now and again my son’s just starting to die he’s on his third day now and he sent me a text today because he loves ketchup he said mum can you get me sugar free ketchup oh yeah yeah that’s been one of our yeah i’m proud of him that he’s trying really hard because obviously he was on furlough so he was at home working from home eating all the time and he’s you know a little bit of weight so he wants to try and lose it before he goes to dose it in two weeks time um so yeah just to remind people about your website so it’s www.chatter-bug.com and they can find you on social media so if people are interested in checking out the website speech and language therapy um chatter book website and also all across social media um just very quickly someone sent me in a book A Day at the Farm Hattie and Friends by Leslie Berington illustrated by Karen Middleton this is a series of books shows how children of all abilities love to have a day out which we just don’t about with a clear type and colorful illustrations they promote a positive image of disability for young children so available is a day at the zoo a day at the park a day at the seaside and the one that’s been sent to me which is really lovely is A Day at the Farm so if you’re interested um please check out um amazon lots can be so we’re coming to the end now and i just wanted to say it’s been really lovely talking to you and to your lovely daughter um amaya and i hope she when she goes back to school that it’s not so um stressful thank you and you know never never forget that we can set

[Speaker 1] (59:06 – 59:19)
targets for all of our children regardless of their um ability or disability they all have such potential we just need to find them we need to find the key we need to find the key and focus

[Speaker 2] (59:19 – 59:59)
on the positives and um i’ve heard so many stories where parents have been told you know and then they have just flown and really achieved so don’t always believe what everybody says to you so i just want to say again thank you so much it’s been lovely talking to you and to your lovely daughter and i want to wish you all the best and if people want to read a little bit more about what asthma is doing it’ll be on the charity website www.anna kennedy online on our recent latest news page so thank you everyone take care and take care of yourself bye