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Autistic Spectrum Disorder?

Hi everyone,

I was just looking for some advice/guidance from parents with children with ASD.

My daughter is almost 5 years old. She is the second of 4 children. We have always known she has what have been classed as "mild learning difficulties", and have learned to live with them and accept that she needs a little extra support from us, and got on with our lives. We have never had any outside help from healthcare professionals or organisations, as I don't really see what it would achieve.

I was recently chatting to a family friend, who is a teacher, and my daughter was having a bit of a bad day. This friend just casually said "are you sure she doesnt have ASD?". I just said no, but since then it has been playing on my mind.
Some of the things she does are mentioned as signs of ASD on the different websites I have looked at, but it seems IF she does have ASD, it would only be a mild case.
But do I need to get it investigated? I dont want to feel like I am trying to get a diagnosis as I dont see how getting a definite yes or no would help in Ellie's case. She has support at school and her teacher is great with her.
I just dont know if I am now looking for something that isnt there, thinking she may have ASD when she might not.
I am just rambling a bit really. I have spoken to my husband about it, but he just says "she is happy, loved and well cared for, and better than she used to be, so there's not a problem".
If it were you, what would you do? Would you get it investigated just for the sake of having a name for your child's problems?
Its all just a bit of a muddle in my head really. Thanks for reading xxxx

Replies

  • Thats a really difficult one, at the moment your daughter is coping with the support of her class teacher, but will that continue as she goes higher up in the school and on to secondary education, From my personal experience the route to diagnosis is long and hard and full of ups and downs, my son is 3 and is currently being assessed for dyspraxia, sensory processing disorder and ASD amongst other things, I have known since he was born that something is not quite right, he also has muscle weakness which may or may not be down to the sensory issues. It is really draining going down the diagnosis road with all the proffessionals having differeing opinions, just as you think you start getting some way towards an answer someone else with another opinion pops up.

    I would say if you are happy at the moment that you and the school can meet her needs then leave it for now, you can always readdress the situation in the future. xx
  • Hi, I have to agree with hayley, this is a difficult one and although she is ok just now a diagnosis of autism would make a big difference to her once she is older (secondary school and beyond). It's really up to you. I am a teacher at a school for children with learning difficulties and find that there are some parents who are keen for a diagnosis and others who really dont see the need. The kids are treated the same with or without the diagnosis while at school but I know things are different in adult services. good luck with your decision.
  • Hi there. It's great to hear of a child who is well-supported and coping well without the need for additional support. Speaking as a speech and language therapist who works with children and young people with ASD, my first instinct is to think 'if it ain't broke, don't fix it.' If she is happy, making good progress in school, communicates well and has no problems with socialising with peers then I think you're right to question whether a formal diagnosis would be helpful. some parents who have children with an ASD, find that they only require extra support once their child has gone beyond the infant school stage as this is when the gap between their child and school peers starts to widen. This is often due to the increasing complexity of social relationships. As a parent, you will be the first person to notice whether this begins to play a part but until then, I would suggest monitoring things and enjoying the fact that she seems to be coping so well. X
  • Hi campbelly, can I ask you a question please. Isaac has recently had an assessment by a SaLT who diagnosed pragmatic language difficulties, then he attended a speech therapy group for 3 sessions before I was told there was no problem with his speech and he doesnt need speech therapy (I never thought he did) he has just also had a GL assessment which puts his core speech and visual perception at 48 months (which is almost a year above his age) however his social skills, and physical skills are at 24 months and his self care social are at 18 months, the specialist support teacher who did his assessment said he is also very intelligent. It has been suggested that he may have high functioning autism or aspergers but to early to tell yet. I wonder if you had any thoughts on it, would it be likely to be something he would outgrow or catch up with in the future?

    Thanks H xx
  • Hi Haley. Sorry for the late reply but I only just read your message. What was the focus of the group? Was it to develop his pragmatic language skills or his speech or his language?? It kind of gets down to the definitions of these different terms. He may have no 'speech' problems. This means that he has no difficulties with speech sounds (pronunciations). He may also have no language problems. We would define this as the skills involved in understanding and expressing thoughts through words. You have said that he has been diagnosed as having pragmatic language difficulties. This is the ability to use language appropriately to have successful interactions. It involves skills such as eye-contact, facial expression, gesture, initiating and ending conversations age-appropriately, showing interest in others, using basic humour, asking questions etc.

    When we discharge from SLT services, often we're not saying that the child does not have any needs, but that the child will not benefit from our input at this particular time. I wonder if this is the case with Isaac? Children who are bright and have Asperger's or high-functioning autism often manage very well during their early years as the demands for social interaction are relatively low. There is often no requirement for input from SLT until the child enters primary school and needs support to develop social skills to maintain friendships. Children with these difficulties often find ambiguous or abstract language difficult to understand e.g. word-play, sarcasm, metaphor etc. Again, a child is only expected to begin starting to understand this as they get towards 6 or 7 years of age, so before this the child manages well.

    Not knowing Isaac, I guess I can't comment any more. If it is Asperger's or high-functioning autism, the difficulties will not go away but they will change over time and he will learn to manage any problems so that they are not as obvious. Lots of kids cope well in mainstream without the help of any outside agencies but an understanding and supportive school is a must. In the meantime, it sounds like he has lots of strengths and building on these will give him confidence. All kids, those with 'diagnoses' or not, have their own strengths and weaknesses and Isaac is no different.

    Hope that's been helpful. Let me know if there's anything else.

    Sorry for gate-crashing Cazzywoo!

  • Thanks campbelly, I think it was to develop speech and interaction, he doesnt have a problem with speech but like you say his pragmatic language seems to be the problem at the moment, for example, I cant say to him "lets go and get dressed" as he will think he is wearing a dress, I have to say "Lets get your clothes on", the other week we were at his swimming lesson and the teacher told us to get in a circle and he got upset becuase he couldnt find the circle. I'm not too concerned about it because he is still so very young, I just needed a bit of help to understand what it all meant.
    The EYSST said he was very repetative in what he said but couldnt be sure whether it was echolalia or whether he was just repeating stuff back so that he could process it himself, he does repeat things he hears such as the sat nav in the car and nursery rhymes, when he repeats the nursery rhymes he also repeats the extra bits that his nursery teacher has added in, to use an example, he was in his room the other day singing baa baa black sheep, he got to a point in the song when he said "Kyle you need to sit down please" then he did the nursery rhyme again, saying the same thing at the same point in the rhyme. He also uses really complicated phrases that he has heard me or his older siblings use but he uses them out of context, for instance he says "Its not an option" which is something I have said to his 14 year old brother.

    For the moment I think I am just going to chill and enjoy him, at the end of the day, when he gets to school his teachers will hopefully pick up any problems and for now I am just going to concentrate on his strengths and encourage him.

    Thanks again and sorry for hijacking your post cazzywoo
  • No worries for hijacking ladies !!

    Thank you to everyone for your brilliant advice, it is such a tricky situation. I think what we are going to do is stay as we are for now, but if we find she is needing extra support in the future, take some more steps then. xxxxx
  • Good choice, I have been giving things a lot of thought over the last few weeks and have decided I have got so hung up on seeing what he struggles with and what his difficulties are that I have lost sight of the fact that he is a happy and lovely little boy, who despite his difficulties has a lot of amazing qualities and I wouldnt swap him for the world. I have decided I am not going to push for any more assessments and am going to take a back seat and just enjoy him whilst he is still little. He has another year until he starts school, if he is struggling then, I will rethink x
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