Many parents we interviewed found it valuable and reassuring to hear the personal experiences of other parents (see ‘Support groups’). We asked parents if they had any advice for other parents and they offered a range of comments.
Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.
I think the thing is rather than look for things to blame as well, don’t dwell on it. You have got to move on and look at the positive things, like the little steps they do, that are just routine to a normal child, but something so important to the sort of autistic child. I mean it’s like I say with Joseph answering back, I was just so excited because he’d answered me back and it was just amazing. It was just. Wow he has done it, he has done something normal and the other day they actually started really fighting and well it was just being normal, they are just fighting, look at them they are really scrapping you know. And Adam the little one did come off the better because he is faster, but I think you have just got to sort of be positive. Try and look on the bright side. They’re fit. They’re healthy. They are little monkeys. But I wouldn’t swap them. I just wouldn’t. Not for anything.
The strongest message from parents was to keep fighting, not to worry about being a “pushy parent” and to keep on at health professionals if parents were concerned about their child’s development. Some parents stressed the importance of getting an early diagnosis. One mother said, “Insist. Carry on insisting. Go every single day if you have to until they listen to you” while another commented “It is no good burying your head in the sand because it is not going to go away. It is really not going to go away.”
Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.
And the one thing that parents always have to learn is you have to end up knowing these systems quite well because you have fight for whatever your child wants and needs all the way through. Nothing is ever given to you very easily. The medical professional often don’t really know. You are the only one that knows your child best and if you are dealing with a doctor that deals with hundreds of kids you have got to be very sure, this is what I am sure is going on. Or this is what I want you to look at if you are dealing with the education authorities. Say they really need support. Without it you know they don’t understand the language and I suppose really read up on it and know more about the autistic spectrum because unless as parents, if we don’t know, then we can’t educate people about our kids.
You don’t need to go and educate the whole world but the people that work with them, really do need to know because otherwise they pale into the background which is what happened with Luke.
Some parents emphasised that it was important to remember that “you know your child better than most other people”. Parents recommended keeping lines of communication open with education and health professionals because often walls can go up between parents and professionals. As one parent said: “I would say go with what you feel is right for your child because as I say, there are a lot of experts and there are all these interventions but at the end of the day, you have to feel comfortable with what you are doing.” Another parent recommended:
“An important part of the early days following diagnosis is to sort out the ones who can help you. I think a lot of people want to give you cups of tea and sympathy but despite credentials, may not know how to help your child. It is important to find professionals who have a track record of helping children like yours.
Nick, a design engineer, and Vikki, a teacher, have two sons aged 10 and 8. Ethnic background/nationality: White British.
Nick' Don’t at any point under estimate what – what is the best way of saying this?
Vikki' Well don’t under estimate the power of parents voice...
Vikki' As I said, I think we as parents put in the initial referral to speech and language. We as parents put in the request for the statement, and whether we were lucky we don’t know, but everything that we have done has happened each time in under six months and that is without using any favouritism, any professionals that we knew. It just happened. And it is a case of if that is what you believe in to keep on going.
Nick' Yes. And don’t ever think that you are not deserving of help or assistance. And if you apply for something or try to get help for something, they can only say, but what they can do is they can say yes, and provide you with help. So don’t you know, always try, always ask the questions. Or else you won’t get the answers.
Vikki' I think it is never, never be prepared not to ask silly questions. For example we didn’t know that we could get a free concession card for the cinema and it was only because somebody said to me, “Oh did you not know you could get one? I thought you knew because that is your job.” And I said, “Well I didn’t know.” Or, “Did you not know that you could get a concession ticket to go to the local sports club?” And again we didn’t know. But it is not being embarrassed to ask these silly questions. Going into tourist attractions now, they have these signs up saying, disabled concessionary rates, it’s having the front to say, “Well my son is.” “Oh yes, well you can go to the front of the queue and have a concessionary rate.” It is not being taken advantage of but it is realising that if you only spend half an hour in a museum because the child has to leave then ultimately you want to spend £30 going into the museum.
Some parents stressed how “there is light at the end of the tunnel” and things did get easier. As one parent said; the autism spectrum is not stagnant and the children do not stay the same (see ‘Positive change over time’).
Katrina, a full time carer, and her partner have a daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
Is there anything you want to pass onto parents who are worried about their children’s development or who have just been diagnosed?
For ones that have just been diagnosed I would just say research as much as you can, speak up for your child, because they can’t, don’t worry about being pushy, you have to be. I mean I am so not a pushy person I don’t think, but I am sure professionals would describe me as “oh God, here she comes, pushy parent”, because you have to, you just have to keep pushing and I would say there is a light at the end of the tunnel and there are ways of making your life easier and working through the difficulties whether it is a different school placement or, you know, some sort of therapy or … and my experience within the group is that a lot of children do grow out of those difficulties at age four, five, six, it does seem to get a bit easier. Yes. So I would say there is hope and just remember we are very blessed, because I think they are very special children.
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Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British
Don’t give up. Don’t give up. Let your child develop at their own pace, take as much advice as you want. Be open. Don’t ever close your mind to anything. I’d also say be realistic as well. Be realistic. Sometimes you’ll be surprised what your child can achieve, I’ve been surprised. I didn’t know what to expect when we got the diagnosis seven years ago. I really didn’t know. It was very frightening but we’re still here and my child’s out there in mainstream school. Not everybody’s will be able to but, you know, don’t give up and remember to look after yourself because without you in the equation being fit and healthy, then you’ve got a lot less chance, so be kind, be very kind to yourself.
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Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.
Yes, they are loving, they are fantastic, they are beautiful kids, adults, whatever age they are. It is not the end of the world and just, as I said earlier in the film, to treat it as a challenge, a life changing challenge and you can grow with the person that has got the condition and don’t ever let it hold you back and don’t ever use it as an excuse because it is not. They have just got so much to offer and they will bring a lot of joy. If you embrace the situation and don’t let it get you down as I have done in the past you will learn a lot and see a lot, and I think overall if you try and just accept it as it is, you will, I don’t want to say enjoy the situation, but you will get the most out of it that you possibly can and the whole core of that is accept it in the first place and move on.
And all I can say is things have got better and improved since Nicola was young and just challenge the system because the system will never change if people don’t challenge it and say that “this is not what we want” and have a users and a carers voice and do it and just … just get what you want, just get what you want for your child, or your person that you care for. And help them realise their potential, because they have got a lot of potential and a lot to give. And that is it. I don’t know what else to say because I am a lot further down the line than a lot of you probably will be. And it has been a bumpy ride but I am a much better person for it, I know that and in the future I want to tell people what I have been through. It is not all bad. I have got Nicola to show for the system and to show for what has occurred and as you will see if you see anything of her on the tape or the video that they do achieve. They do lead good, healthy, happy lives and as long as they get the help and the guidance that they need.
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Nicki, a local authority employee, and Mark, a full time carer, have two children; Tyler aged six and Emma aged five. Ethnic background/nationality: White British
Nicki' Yes. Just after Tyler was diagnosed, I went to a friend’s daughter’s birthday party. Tyler goes into meltdown with birthday cakes then the candles are blown out.
Nicki' One of his things. And I said to her before we went I don’t want people looking at him like he is a freak and this happens, so can you warn people. She went don’t worry, she said, “My husband’s cousin, is autistic, and he is 16 now and everybody understands. That is fine.” I went into this party and start chatting to this young man without even realising it was this person. He was very clear on which subjects he would discuss with you and have a conversation with you and which ones he wouldn’t and if you diverted from his chosen list of subjects, he would steer you straight back on. But other that than he was a very competent, able young man.
I then had a conversation with his mum and I said, “I am terribly worried about what the future holds for Tyler.” He had only just been diagnosed. I was going through that emotional roller coaster, blame, guilt, dread, regret. What if I had got pregnant a week later? What if I had got pregnant a month later? Would my child be okay? All of those things and she said to me, “If there is one thing I can say to you, is don’t waste your time worrying about it. Don’t worry about it. He will be fine.” She said, “I wasted a long time worrying about how my son would turn out.” She said, “He has just finished with his girlfriend because he was bored with her. She didn’t finish with him. He is going to college.” She said. “And he is lower functioning then your son.”
I mean for me, I think the message would be. It is still your child. They have awful lot to offer. They are just different. They are not wrong, they are not ill. I don’t even think that autism counts as a disability really. They are just different and you just need to understand the way they think, the way their mind works. There is nothing wrong with going through that cycle of you know, “what did I do, is it me?” You are going to go through that anyway. But at the end of the day you will come out the other side of it and you will appreciate your child and you will realise that actually it is not all bad.
One of the things that I saw about children with autism, it was a badge actually and it says, ‘God gives special children to special parents for special reasons” and I think that is a lovely expression because you become, you become a different type of parent I think to a child with autism.
Some parents stressed the importance of finding out as much information as possible and encouraged parents to keep reading about autism (see ‘Information’). As one parent suggested “Information is key. Research everything. Start looking, start looking into everything. Everything, absolutely everything and keep your mind as open as possible.” Another parent said:
"What is important about parenting people on the spectrum is picking your priorities and dealing with that one and you can’t just address the whole lot all in one go because if they were doing something that is really inappropriate, like picking their bum in public or something like that, then you know that is what you deal with, you don’t go dealing with tact or whatever else, you focus on that one."
One parent said it was important to keep calm and not fly off the handle if possible. Others strongly recommended joining a support group and talking to other parents who were going through or had been through similar experiences (see ‘Support groups’).
Amanda, a part time yoga instructor, and her husband have two children; Louis aged 5 and Georgia, aged 3. Ethnic background/nationality: White British.
And I would just say to anybody with a newly diagnosed child is you know, I mean it is not every body’s cup of tea going to support groups, but just don’t be alone with it. You know. Go and talk to people, get out there. You know. You might think that you can’t take your child anywhere but if you go with a group then you know they do organised trips and things and you can go and you realise that you are not on your own. There is other parents and you will make some friends. There is other parents going through the same. You know I mean without [support group] I probably would be not as calm as I am today because it is just, they are at the end of the phone if you need some advice, they are at the end of the phone. You know it is just and I think what can happen sometimes is – and I found this myself, but I am quite determined no to lose all my friends who haven’t got autistic children. I am quite determined that that is not going to happen.
But it is quite hard sometimes to always be around kids that aren’t autistic because it sort of drives it home a little bit sometimes that your child is different and it can be quite upsetting. But then you don’t want people having to step round you on egg shells but you know if you can go to a group as well and be around other people you know you just feel like, you feel normal, you know, it brings a bit of normality to it for you. You are not in a group where your’s is the child that is always, you know, on the outskirts or kicking off. You know you are going to go to a group and everybody has got their own story and you feel quite normal, whatever that is [laughs]. I don’t think there is such a thing is there?