“I Just Want Him to Be Happy:” The Long Road To An Autism Diagnosis For Mother & Son

TRIGGER WARNING: This article discusses extreme topics surrounding mental health.

Interview Transcript



Unknown Speaker 0:01  

Good morning. My name is Dr. Lisa sands, and I am a consultant Child and Adolescent psychiatrist. I, this is part of mind your life, which is a new project that I'm very excited in starting to work on mental health, try and normalize it and help people with mental problems out there. As part of mind, your life one of the aspects is to interview people that want to share their experience with mental health difficulties or their journey with a family member. And today, we've got Lucy with us we who is a parent, and she's been very kindly, to very kind to agree to being interviewed today. So if I just let Lucy Introduce yourself, good morning, Lucy. Morning. Yeah, I'm Lucy. I'm miles is mom, who has autism and ADHD. Yes. Thank you, Lucy. What are we going to do today? Just hear from you, Lucy, for you to put us in the context of what the journey for you having a son with autism and ADHD? What follows to understand your journey? would you would you let us know how? How did you know that that you know that? Myles was struggling with with difficulties? How did it start? How did it show?

Unknown Speaker 1:37  

I didn't really know to be honest, I know that sounds really odd. But I was a very young mom. I hadn't when I was 15. And I didn't have anything else to relate it to. So and I myself, I'm quite I like things done a certain way. So just seeing him, you know, like around three, four. And he liked things his way of certain way. I thought I was just like me, you know, I related to it. Really. I just remember thinking because he was right on the cusp. His birthday is in August. 

So the school had said, you know, we can start up four, or you can wait till next year when he's five. And I just remember thinking, I'd like to get him in now. Because I want to get him used to it as soon as possible. But panicking thinking they're not going to know he likes his food a certain way. They're not going to know he likes his shoes a certain way. That kind of things. You know what I mean? Just all these very, very specific things. I just remember thinking they're not going to understand this. And obviously myself not understanding what that word means for him. I used to get a lot of phone calls a day like he's done this. He's done that he's screaming, he's he won't sit down on the carpet with the other children when next storytime or when we're doing this. It's what we're doing now. And they just put it down to naughtiness. They just put it on me being a young mum said social services around it had a social worker come in, once, sometimes twice a week, for quite some time. And I remember her saying to me, she said you you do everything we asked you. She said you do absolutely everything that I asked you to do. She She just said this is not you. This is something more referred as to the GP, where they're referred us to comes and started doing assessments, but I felt like the assessments were more on me rather than miles again, because I was a young mom, it was just a lot of judgment. It was well what's your background? What's your upbringing, things like that. Which again, my background and upbringing wasn't great. My mom was is bipolar and an alcoholic. So I didn't have the best of upbringings. So I think again, it was just all filtered into your mom by the bringing, you know, just that and again was asked to you know, attend parenting classes I was asked to pay for parenting classes as well. You know, you'll have to pay for them. This is what you need to be doing. And I can't quite remember I just I make no secret about it. I've comms are, have been useless time and time again. In my experience. I'm not saying that that's everyone's experience, but in my useless time and time again, I think I've been involved with them three or four times. Well, the other thing they said that he had an attachment disorder, the diagnosed him with an attachment disorder and said it was because again, I was a young mom and I had not done what I should have been doing. I have not bonded with him properly. I hadn't done it was all me all my fault. And yeah, I think I just dug my heels in. And I was like, No, this is not I know, I've done everything I know, I've been doing what I've been meant to be doing. And then that's when he was diagnosed with autism. Finally, after a good year to 18 months, so how old was mild then Lucy he would have been about five going on six, five and a half to six.

Unknown Speaker 5:47  

Okay, so it really difficult two or three years until he was diagnosed, what happened then after he was diagnosed?

Unknown Speaker 5:56  

Oh, it was even it was still difficult then to be honest. They gave him a one to one he was in a mainstream school, they gave him a one to one who would obviously be with Him every day in the classroom, I think it's got too much he take them outside. They do things that his pose that and level. But still, it was even just he would only eat certain foods and things like that as well. It just always seemed to be everything was my fault. You know, they said why you given him the same thing is lunch every day, you know, threatening me with social services again, what do we have to call social services? And I was like, you know, he's autistic, you know, he will, you know, alright, so they're just not put anything in his lunchbox and he doesn't eat because I've been there. I've tried that on, you know, if you don't eat what you give him, you don't try to get them to eat something new. And he just wouldn't eat, you know, you can't starve the child, you're gonna have to feed him at some point. So yeah, it just seemed to be like it was targeted at me. Until they eventually said we can't come up with him here. And he was out of school for a while till they couldn't find one for him. And then that school was about an hour away. They couldn't find one in the local area. So it was about an hour away. And that was when the Oh gosh, how old was he then? I think it would have been about seven or eight at that point. Yeah, so it was a good long drawn out process. I'm not gonna lie not easier. So

Unknown Speaker 7:39  

yeah. And and I think it's important to mention that miles at the moment is in a residential school for children with neurodevelopmental disorders in the spectrum in the autistic spectrum or with learning difficulties or, and learning difficulties and other mental health problems like ADHD or, or anxiety or others. And I think that it's important to mention that when a kid resigns in a in a specialist school, the the the presentation is very, very challenging to the point that a mainstream school cannot manage him. And that at home, his behavior is also quite extreme to require a residential school with an education input there. So I think I think it's important to mention that because the reality is the way I see it loses that because his presentation was quite extreme that the and and school wasn't recognizing the degree of difficulty and and it took you ages for services, social services comes in to understand what what was a problem and, and try to explain it on the basis of your background and your family history and attachment. And, you know, and because his presentation was so severe, that's why you struggle so much really trying to make people think and realize this is more than just a you know, context and behavior. Okay, so I remember Lucy, you mentioned in some instances to me in a previously about you know, specific times where you as a parent felt quite helpless and, and lonely Really? Do you want to share some of those experiences where you thought, gosh, you know, can't can't cope with these anymore.

Unknown Speaker 9:39  

I'm not gonna lie still, I still face it. It's still it's it's a very isolating and lonely thing. I don't have parents as my dad passed when I was 25. And my as I say, My mom is just not somebody that I would like to be involved personally or have my son around. So yeah, it's quite isolating and lonely because, you know, you can't, you know, people take kids out, and they'll go meet a friend and have a coffee and the kids are playing in the park or things like that. miles just cannot do that. And I remember somebody saying, you know, we were on a call together, me and another lady, and she was saying, oh, why don't you bring him over and manual, get on with some work if you can play with a capsule or watch TV? And I was like, you just won't do that. And she was like, Well, how do you know if you haven't tried? And I was just like, he won't do that it won't happen. And she was sort of like rolling her eyes at me as if to say, like, you know, oh, you won't try you won't bring him over. And no, no, no, it just I'm telling you, it will not happen. And a lot of people just don't understand. And again, there are different levels of autism, ADHD, everything. It's a spectrum. I'm not saying that some children with autism or ADHD and or ADHD can't do that. But my son cannot. He just can't vote yet. There's been times when I took him. I took him swimming, I was trying to teach him to swim. And every time the water splashed near his face, and I'd gone specifically on a date and time, when I knew it was quiet, I actually worked in that leisure center. So I knew it was tight, quiet at that time. And the water was splashing in his face sometimes, obviously. And you know, there were a couple of other kids about and it was getting splashed. It's gonna happen. But he was screaming. And he'd my partner taking him off for a minute. And a guy came up to me and he said, Do you know what you need to do? You just need to sit him down, look him in the eyes and give them a good hard smack

Unknown Speaker 11:51  

on I

Unknown Speaker 11:53  

don't even know, I

Unknown Speaker 11:54  

just thought thought, I don't even know. I don't, my only response was, who's autistic. And this guy's face went bright red, he didn't eat it just turned around and went away. And actually saw him in a supermarket. About a week or so later, it must have been with his partner. He was on his own at the time in the swimming pool, but he was in the supermarket with his partner and I saw him clutch your hand and like drag her away. Because he must have thought, Oh, you know, what if she comes up and say something? What if she's long enough to think about a response and he just darted away from me and I thought I never would I wouldn't do that because you obviously know what you said was wrong. Whether my child is autistic or not. What is wrong with people to think that that is an okay thing? An okay reaction to your child screaming in the swimming pool? Kids scream autistic or not ADHD or not kids scream? And again, in the same supermarket, miles was screaming, screaming once I can't remember what are the no idea? The tiniest things. So the tiniest things do upset if you see someone I'm laughing It's not funny. But it can be it can be funny. So somebody must have had their hands in their pockets or their hands behind the back something like that. And this kind of thing, really upset smiles. And it was just screaming at a man walked past with his son. And I remember his song. It was it can't have been very old five, six. And he said, Dad, what's wrong with that little volume that dad just said, I don't know. He must be an effing psycho. Again, what? Why would you say that about a child? And to Why would you say that to your child? The mind boggles really does, you know. Yeah, we've faced all kinds of things like that. And I remember one that I don't know why this one upset me so much. Because it's not even really as bad as those two. But this one stuck with me for quite a while. miles was out of school at one point for almost four years because the council just could not find one to meet his requirements, and had taken him to the cinema one day. And we were queuing for the tickets while so I was queuing he was running around because he just couldn't sit still. He was like running up and down stairs and things I could see him obviously wasn't out of sight. And a woman behind me said to her husband, isn't it funny, I was not well enough to go to school, but is well enough to be in the cinema. And I did just I didn't say anything. I actually can't remember whether I said anything. I don't think I said a word. I actually don't think I said a word. I think I said a lot in my head. I think I had a lot of responses in my mind. But I don't think I actually said a word to her. I think it's around and had a look and she obviously knew that I'd heard and she wanted me to hear but that will really stuck with me because I'd Just remember thinking this is not my fault. This is not my choice. Yeah, yeah, you have no idea how my day their life isn't to do anything dream and get the energy to take him to cinema because that took years like exactly he would not sit and watch your film. He the first time we went to the cinema I think it lasted about five minutes we have to sit, you know, the little walkway that you come down we sat in that day because he wouldn't sit with everyone else. And then the second time I managed to get you sitting on the status Yeah, it took a lot of years just to and I I always wanted him to be able to do in quotations normal things. So I persevered and I just I think that's probably why it looks like me so much actually. But listen,

Unknown Speaker 15:52  

it sounds like very very unfair doesn't it Lucy that you know, regardless of how hard you try and as a parent you know you seem to get knocked down for your efforts and you try and get in swimming so he does you learn to swim and you criticised for not keeping your child under control and you try and you know do something with him when his office call because you know he hasn't got a placement to attend and then you're criticized anyway for doing so. And he's just like, it sounds like you know, people have a tendency to make assumptions and we don't realize how wrong those assumptions are. And whereas we don't realize how much damage we do on doing so because I suppose Lucy you never lost the drive you loved your son so much that you never lost the drive to continue to try and continue to do the best for you soon. But other parents more insecure word less confident on well themselves would have given up much earlier and and i think that that's I think that's a you know, a really important point that we need to highlight you know the I think people want you to give up you know if I've taken that away and said oh yeah, it's all my fault he's got an attachment disorder because I didn't do my best I was too young I had this I had that you know, they were saying no, you were so young when you had him you were prone to postnatal depression and obviously your surrounding circumstances if I'd have just taken that and said okay, he's got an attachment disorder I hate to think where I'd be now and again, the local authority have been nothing but useless. In my eyes In my opinion, I get very very little help. I've asked for a social worker on more than one occasion and being told I don't qualify for one I don't need one You know, I've been asked why do you think you need one for some help for some support you know, some recent guidance Yeah. Additional leads help me yes very very little help where I am because also we've not mentioned but but you are on your own you you've said you don't have much help from your parents your your dad pass you want your mommy's in really in a position to help but also miles dad, you've been separated from from miles very early age, haven't you? So even though dad, is there some degree he's not really a consistent supporting influence.

Unknown Speaker 18:31  

He's consistent. Yeah, he's consistent. He's just I don't mean to laugh again. He's just a typical dads. He's just I'm here to play. I'll do the video games. I'll do the days out with the pizzas and the burgers and the ice cream. Yeah, is he's not taking anything away from him. You know, we'd be lost without him. But he's not an authority figure. Yeah, I wouldn't he is more of a play man. Yeah,

Unknown Speaker 19:11  

yeah. I suppose when I was saying consistent I meant like seven days a week because you're separated he's not there all the time. Yeah,

Unknown Speaker 19:20  

yeah. Yeah. And he works shifts as well yeah, yeah don't that's nice.

Unknown Speaker 19:26  

Whenever there is whenever there is a problem an issue a concerned with mild issue who who is contacted is an aid and who you know deals with it so you are the consistent you know, adult figure responsible figure for four four miles and yeah you get you know, rest bite you know with a died and with a dad and that but Okay, good.

Unknown Speaker 19:50  

Day overnight or anything. Very, very rarely once in a blue moon. But yeah, they have days out quite often and things like that. So that helps.

Unknown Speaker 19:59  

Okay, so I assume for what you've been saying that, you know, what you would have liked to half throughout the, you know, miles childhood and adolescence is better sort of quality provision from services from cams from the local authority, and more sort of support from a family friend sort of group, you know, sort of thing in inverted commas, because as you very well said, you know, miles, miles degree of of difficulties are very high and therefore, limit very much, you know, how people can support you and family can support you, but I suppose, you know, I'm referring to the sort of response that you were talking about in terms of family, if, you know, family members and really close friends that could have taken miles away or, or something like that. And so what would you say the Lucy, that was the most helpful thing or has been, you know, miles is now how old tell us? He's sick. Now? Yeah, okay. Yeah, so miles is 16 and a half? Yeah, yeah. Yeah. Yeah. Yeah. So miles. Yeah. So miles is 16 and a half How? What, what has been the most helpful bit about, about your journey with him? What, you know, what can you think that? That has been, you know,

Unknown Speaker 21:38  

now that I've actually told you this, but your involvement and your involvement? Nobody really took a serious it's like until you step to the the last school that he was at. I'm not even sure I've actually told you about the last school that he was at, I had to threaten them with the media. Because he was coming home bruised, scratched. They've called him names, some awful names. And it was he needs to to one already that that's all that's what they that's what his statement, eh, eh, C is h theory, HP y velocity. HP, HP? Is HP plot, educational health program or plan? That's hc. Yes, at the law school, he was out there was saying that he needed to to one. And these, it was two young girls, early 20s. And there's just I just don't think there's enough training for these, you know, or not in a screening event for people that

Unknown Speaker 22:46  

work with

Unknown Speaker 22:49  

these young children, and they take him to the Trafford Centre one day for a day out. And I don't know if you've been, but they're, like these big marble pillars, and hidden behind one of those, and he was like, looking around screaming for them, like, I'm lost, help me, I'm lost. And then they jumped out and laughed, and then he obviously kicked off, you know, calling them names lashing out at them. So they've had to put him in a hold. And he had like, fingermark, bruises on his arm scratches it, what's going on with a big wine brew was across the bottom of his back. And when I asked him how we've gotten that, he said, It pushed him up against a Windows bill. So a file was it a ladder report was filed. And again, the local authority in my area, because it had to go to a different area to for a school that could, you know, meet his needs. And the local authority in my area said, because I wanted to take it out of that score. So this is not No, no, no, he's not coming home every weekend like this. And my local authorities that well, his educational needs are being met, so we're not gonna take him out. All right, okay. His educational needs are being met, but he's coming home black and blue. And I said, Okay, well, I'll go to the media. I'll go to the press, I'll let them know. So then they kicked him out of the school on account of my what was it now? What did they say? On account of my colorful language, something to that effect? inflammatory manner? I don't know. I could have gotten more inflammatory. But yeah, livid. See, then doesn't cross it does not cross it. So then he was out of school for almost two years at that point. When he came to school, he's at work, obviously, you've seen him. And yet it was your involvement, where it's like, wow, somebody is listening. It's not this child is naughty. It's not this child is abrupt. He is you know, there's that and the other. It's okay, this child has some needs. How can we help what can we do for those, you know, you've given him you worked with him. a therapist and he talks he is medicated is on multiple medications. It's not just a case of all let's try to see if this works. Okay, stop that. Let's try that it's, you know, you work with me to see what I need you you speak to Myles as well and ask him what he needs. So it's definitely your involvement that is kind of like up to here What? In all honesty, there's a part of me that that is dreading him leaving the school, because where will I be going again, then, you know, obviously, we won't have your involvement, and he will be coming back home with our local authority. And I know how, how they are. So yeah, there's a bit of a worry in my mind of what happens then when he leaves school definitely.

Unknown Speaker 25:49  

Well, hopefully, by the time he leaves, the school that he's at the moment, we will have, you know, confirm certain diagnosis, stabilized human treatment, and then he will continue on that being stable. Any changes, as I said before, I remember very well, the first time I met Myles because he was textbook, a young lad in the spectrum. And you know, I remember asking him a question just to break the ice just to make him feel comfortable. And he looked at me very serious. And he said, What a stupid question to ask. And I thought, Oh, I'm really sorry that you know, that you think is a stupid question. But the import, he was typical textbook, you know, he thinks I'm asking something that is silly. And he tells me, he's not wanting to be offensive, or he's not wanting to be disrespectful. He comes across like that. But you know what he says, what you asked me that for what a waste of a question. And remember, you know, sort of, you know, rephrasing it and saying, Well, I was wondering, I can't remember what the question was. But But I thought, gosh, she's going to be challenging. And he has been and again, but we, we have these relationship miles and I were when he is when he's in a good frame of mind. And he's well, and he wants to see me we have a chart, I get it straight away, when he's anxious, more distress, he's having a bad day. And I just let him go, I guess. But of course, I can do that because I provide these clinics for the school on a fortnightly basis. Any doctor in Cam's wouldn't have that luxury but but but usual ride I think that you know, with with his anxiety was so high that he needed medication for the anxiety, but his his behavior could be so aggressive that he also needed some some medication for that, that aggressive behavior. And then once we got that, sort of managed, we we thought, gosh, you know, he's he's very easily distracted is always his minds on always wondering of his self esteem is very, very low, because he doesn't see himself capable of doing anything he started talking about, I'm going to be on my own, when I'm older, nobody's going to love me knows, go, nobody's going to want and never be successful, I'll never be able to hold the job. And we thought we need to look into ADHD. And we did the the assessment and he was really against scoring quite highly for the inability to concentrate. So now we've only started him on some medication for ADHD. And we're monitoring that, aren't we? So hopefully, as I say, by the time he needs to leave school, because of his age, you know, he will have responded, we will have a good a good package of treatment for him. His life is never going to be easy. And we know that. And he's always going to require support and we know that but at least you know things will be more clear in terms of what what that health might might be. Might need to look like. So that's that's that's good. Good. Well, thank you vote for those for those words. Lucy I really appreciated and what do you want one of the last few sort of questions before we finish Lucy? What what? What would you ask for the future? What would you I think you've you've already said it, but you know, I can just you know, guess guess from what you've been saying? You know, what do you what do you hope for the next few years for miles? What do you hope? Um,

Unknown Speaker 29:22  

I just want him to be happy and as you said, with his anxiety on top of the ADHD on the autism, you know, he can be very paranoid which is another difficult thing to take him out. You know, people are looking at me people think I'm retarded people think of this is very, very aware. He's very, the way I always describe him is Sheldon from the big bang theory, but with quite nasty and violent outbursts. And he's very, very intelligent. He's very articulate. He is the funniest person I've ever met. He's absolutely stunning. I recall, but yes, his anxieties and his worries, I would love for those to go away, I would love for him to he always tells me he wants to live with me. He says if he gets a husband or a wife, because he's not married, my look is not quite sure what he wants yet. So if he gets a husband or wife come to live with me. And I said, Yes. And if we have children, can I live with you as well? And I said, Yes. And so if he wants to, you know, live with me forever, than if I'm quite happy for him to live with me forever with his wife and his husband or his children or wherever he wants to live with?

Unknown Speaker 30:31  

That is very sweet, when he shows how he knows, you have always been there for him and will continue to be. So you are the one you know, consistent, really loving. figure for him. Yeah,

Unknown Speaker 30:47  

yeah, was that he lived with me as long as he wants to. But I think he is aware now that his options could be to live in something like assisted living something like that, possibly. So I would hope for that, because I would like him to have as much of the life that he can have, he just worried about not having anybody to love Him not having a part and things like that. So I would love for, you know, I was looking the other day for something in our area, like for autistic dating, things of that nature, because I'd love for him to, to meet someone and be with someone. So I think that's sort of just like my next hope, just willing to settle a little bit. And I mean, settle in terms of his worries and anxieties. I don't, I'm not gonna lie to you, I have no idea what the future does hold for him because of what the help that exists out there looks like, if it was consistent to the area that is in for the school where you see him. That would be lovely, I would have a lot more confidence. But the fact that obviously, he will be coming back home because he almost two hours away at the minute now he is actually I think when you start now that it's like two hours, 10 minutes. So when he comes home, as I say our local authority is very, very different, our help that we are offered. So I try not to think about it. But I would love for there to be a lot more support a lot more. involvement is the word. Just involvement just care. Care. Because it doesn't feel like anybody cares. It feels like it's getting forms don't get the box tick. And that's it off you go. We don't actually care. That is how it feels.

Unknown Speaker 32:45  

Yeah, yeah. Yeah. Well, hopefully as I say things thing, hopefully Fingers crossed, things will become easier for him. And yes, you're right at the moment. He's on a very easily very critical stage because he's I see him very vulnerable, very insecure word. When you say that he becomes paranoid very suspicious, you ride but it comes from a very low self esteem. He comes across as you know, almost overconfident loud in on your face will tell you off being but deep down, he's extremely vulnerable, insecure and anxious is very, very, very vulnerable. And that's why he puts that front. You know, he's attacking as as a defense mechanism. So so so he feels safer, more in control. Okay, so just just to finish, then, Lucy, what, what would you like? people this is not about services only but people out there, what would be your message to people. If you if there is anything that you'd like to share?

Unknown Speaker 33:53  

Just think twice before you comment on a kid's screaming or something that a parent is doing. Just think twice before you pass any judgment, any comments, because regardless of whether that child has any additional needs or not, we're all human. You know if a child is having a tantrum, just another example. The first school that he went to when he was four, it was literally out of my front door and over the road, not even kidding across the street and it was at the other side of the road. It was took me 20 minutes to get him home. He was just screaming. You know, I was trying to pick him up and he was like hitting me things like that. Not one person in that 20 minutes says, Do you need a hand? Can I help? Nothing?

Unknown Speaker 34:44  

No one. You know, just

Unknown Speaker 34:47  

a lot of stirring, totting comments. Just think twice before you again pass any judgment or make any common if a child is Having a bit of an outburst? Yeah.

Unknown Speaker 35:03  

Yeah. Lucy, I think I share, I share your view completely. And that would be my message to you know, out there as well you know, if anything, if anything from me needs to be, you know, highlighted today would be the, you know, the Myles presents with a very complex difficulty of in autistic spectrum ADHD anxiety, but his life has been made so much harder, because because people around him have not shown enough care, compassion, acceptance, respect, love, and that has made his journey and yours as it consequences, so much harder. So my, my message would be, as you very well said, you know, many times we make wrong assumptions. And what we need to be doing is being just more accepting and caring and loving and compassionate. And that itself will make a big, big difference. And, and to you, Lucy, so we need more people to be more compassionate and caring, but we also need more people like you more parents like you, with your strength with your determination. And with your unlimited infinite, you know, loving attitude towards your son. So you know, the adapt salutely love it.

Unknown Speaker 36:33  

I know, you talk a lot about who's out versus things like these one liners. I remember the school that he's at now. When he first went there, like your son's humor is second to none. And I was like, I know that's why msso tells me laughing all day every day, though, is humorous, right? sarcastic, sometimes quite dark, but he's so lovable. You can't help but not loving and you know, part of one our two teachers so we shouldn't say this is a few people's favorite. And I just think yes,

Unknown Speaker 37:12  

yes, yes. Lucy, you see his soul and his go to beautiful soul. He's just a lost soul at the moment. He just doesn't know what to do what to do with himself. And he come and he comes across as violent and aggressive and, and heartless and, but you do see his soul and that's why you are you know, 100% there for him. That is the other side to him as well. He is actually so so caring and loving. He can't stand to see anybody upset. anyone hurt people, animals, anything. You know, he's very, very caring. Yeah, yeah. Yeah. Well, thank you very, very much for your time Lucy, I really appreciate it. I think I'm hoping that you know, people will will hear you will hear us and these will make people think twice and become a little bit more caring and, and giving which is ultimately what we want to do what you know, here in mind, your life. So thank you so much, and all the very best to both of you. Thank you very much.