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Coming to terms with an Autism diagnosis for your child

SparkleSheffieldAutismAdvisorsSparkleSheffieldAutismAdvisors Posts: 19Volunteer community advisor Connected
edited April 8 in Guest blogs

Sparkle Sheffield is an award-winning charity supporting children and young people with autism and their families. We welcome them today as our new Autism and Aspergers advisors here on the community. 

The charity is voluntary led and delivered and provides direct support to children, young people and their families. It was founded by Liesje Dusauzay, a mother of a severely autistic child, who identified the lack of support, guidance and direct help for children and young people with autism and their families. 


From having experienced this herself, along with the isolation and barriers faced in society; she brought together other mothers, fathers and carers (including foster carers and other primary care givers) who were in similar situations. From this they began as a peer support group before becoming more formalised via constituted group status as Sparkle Sheffield grew in size and reach.



When you first realise that your child will not develop in the way you had imagined it’s very difficult. A common psychological issue is the grieving for the child you thought you had and accepting the child you have. Seeing the gap between your child and their same age peers is heartbreaking. Plus, when your friends and families younger children start to overtake your own child with their development it can cause significant stress and anxiety. 

It’s also common for parent/carers to disagree over their child’s development and the strategies that should be used, leading to cracks within the family unit. It is well documented in various literature about the connection between stress and Special Needs parenting. 

Our whole society is geared up to exclude people with Neuro Differences. The way we work, live, relax and educate, is all geared toward Neuro-typical people. Although the environments do not intentionally exclude, they do essentially have the same affect, due to a lack of understanding and misconceptions.

Meeting other parent/carers in the same situation creates a community of parent/carers who can discuss, debate and learn from and with each other. Many of the traditional parenting strategies used for Neuro-typical children will not work for an autistic child. Such statements as ‘he’ll eat when he’s hungry’ and ‘she’ll drink when she’s thirsty’ are meaningless. 

We run a group called Twinkle which is a sibling support group for children aged 7-16yrs who have a brother or sister with autism. They are given space to express their feelings to professionals, with confidence that what is said stays within the group, helping the twinkle children with the emotional aspects of having an autistic sibling.

Our support is not just for the child or young person with autism but for the whole family unit, we are starting as the new Autism advisors here on the online community and we look forward in offering your support and information around Autism. 

Tell us about your experience of diagnosis, has your child been diagnosed with autism? How did you feel? Do you have any advise for other parents or carers? We would love to hear from you.


Replies

  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Great post, welcome to the community @SparkleSheffieldAutismAdvisors :)
  • SparkleSheffieldAutismAdvisorsSparkleSheffieldAutismAdvisors Posts: 19Volunteer community advisor Connected
    Thank you Antonia 

  • GeoarkGeoark Posts: 1,075Community champion Pioneering
    Hello @SparkleSheffieldAutismAdvisors and welcome to the community.

    For me I never felt a sense of loss when we were eventually told she may have aspergers. After years of being told that it was because she was shy, an only child or some other natural reason my relationship with spiralling downwards fast. As I learned more about aspergers the more I learned to understand her. In a way it was journey of discovering who this stranger who had landed in our lives was and understanding who she was. 

    The hardest and lowest point came when I realised I was part of the problem and she would be better off without me  in her life. Fortunately I got over this, after all she was the one who went to school every day, come home and have a meltdown, cry herself to sleep and then got up in the morning and went through the whole process again, she deserved better from me.

    One of the things which used to wind me up was we would have a good day and suddenly she would change but her body language was exaggerated as if she was deliberately trying to wind me up. I eventually worked out the reason for this was because she was learning her body language from watching cartoons. As these and other things clicked in place I stopped being a parent and became the father of a beautiful girl. Things got a lot better, not because she changed, but because I did.

    Her teen years were a nightmare for me. Constantly questioning my own decisions regarding what she can do or not do. Was I saying yes or no because I thought it was not age appropriate, because she was a girl, or because of my own fears about what could happen because of the two previous reasons plus she was an aspie and therefor more vulnerable. I didn't always like her choice friends, but she has a way of creating fierce loyalties in those few friends she has. I didn't appreciate some of her choices in clothes or accessories, but she had the right to explore who she was and so continued to encourage her.

    Just after her diagnosis, at 12, I was invited to a parent support group. I only went once as it was not for me. One parent said she wanted her daughter steralised and did not think they should be allowed to have sex when they grew up. Others expressed similar feelings though not quite so extreme. I was asked my opinion and said I wanted my daughter to grow up happy and with a full life including being in a loving relationship with a healthy sex life, be it with a man or a woman - at the time she was starting to question her sexuality. What I took most from that session was how much the parents wanted to restrict what their children were doing and wrapping them in cotton wool. For me I wanted my daughter to have the skills and confidence to do the one thing she had mentioned doing since she was very young  - go to university. This meant giving her greater freedom as she got older and allowing her to make mistakes and to learn from them.

    Now past her mid 20's she has her degree, has been with the same employer since leaving university and has taken holidays abroad with and without friends. We have a great relationship and regularly do things together. Later this year we are taking our first holiday together, a boating holiday on the Norfolk Broads. Yep, the two of us alone stuck on a boat.

    I occassionally look back to the turning point in our relationship when she was 10, yes I had screwed up big time up to that point and I am certain I have made many mistakes since then. It would have been so easy to walk off and believe it was what was best for her, but I am glad I chose not too. 

    Best advice I ever got was from a friend with three older daughters when I asked him how he coped. He told me to relax and forget the worries and concerns, they rarely happened, but be there when they need you. He was right. My advice to other parents. We live in a society which increasingly believes that children should always come first, but sometimes putting our own needs first is putting our children first. If you are constantly tired, stressed out, fighting the system, not taking care of your own physical and mental welfare first then you won't be as affective as a parent. If you constantly feel overwhelmed and cannot see things changing reach out. Be it family, friends, local support groups, online peer support groups, doctor or even the samaritans.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • sarahp9802sarahp9802 Posts: 1Member Listener
    Thank you my son is going through the process of diagnosis at the moment though we know he has Autism, more higher functioning, even the assessors have agreed but still have to go through all the different steps.

    He starts High School in September and will be main stream, I am hoping it goes well but prepared to step in if it doesn’t.  He is very clever in everything except English literature and Language, his reading age is low but can read a very complicated text about WWI or II, or anything scientific, mathematical, geographical, other historical etc so if he is interested he can read it but give him a boring reading book or page of text he struggles so he gets marked down.  He really does struggle it isn’t him being stubborn, he can’t focus or at other times is so focused he is oblivious to the whole world.

    i am mostly worried about the social side of high school as he doesn’t understand other people at all, he has started copying other people on how to react to stuff which is good and bad.

    i am meeting with the SEN dept in a few weeks so I need to decide what exactly he needs help with, but it is hard because if possible he wants no help??  But then to be able to get it later if needed?? Later being week 2 maybe 😂.

    such a hard part of life for all kids, he is so excited about it and I love that he is, they also have some transition days coming up too.

    any experience people have had would be appreciated x
  • GeoarkGeoark Posts: 1,075Community champion Pioneering
    The transition can be very difficult for children on the spectrum. It can be very chaotic, especially at the beginning. Different teachers for different subjects, different classrooms, larger number of people different rules which seem to be applied at random. Expectations on individuals behaviour, responsibility etc goes up several notches.

    This has an impact on parents as well, as to who you ask to speak to about different things. SEN, pastoral team, year head, deputy head, head and a potential horde of others. We were lucky that we were able to develop a good relationship with the SENCO who was our main contact point while our daughter was at the school. 

    One of the hardest conflicts to deal with can be the parent/school relationship. If your child has a meltdown and does something wrong the school will obviously want to talk to you about your child's behaviour. As a parent it is unsurprising that you focus on what happened to cause the behaviour, but the school is more focussed on how the child reacted. I found the easiest way to get to the bottom of things was to let them do their thing, explain that you would talk to your child, but then ask for an explanation of what happened. 

    It lets the school see that you are taking your child's behaviour seriously and will most likely encourage them to work with you to find solutions, and to help find strategies for your child to cope. This is meant in general rather than your son specifically. I think that part of the problem is that they are used to dealing with professionals and forget that parents may not be. My daughter used to hate that I could not tell her exactly what I was going  to say when I went to a meeting, and I had to explain that until I heard what they had to say I would not know the best way to deal with it.

    Hopefully as part of the diagnosis they will identify your son's key strengths and weaknesses and this will help you and the school to develop what help and support he needs. Where possible I would work with your son on what support he gets as his buy into it can help a great deal. On a more practical note one thing I would suggest putting in as early as possible is a 'safe place' he could go to if everything gets over whelming. 

    I do understand the reading issue though. I remember when she was at primary school and one of the new Harry Potter books came out her teacher insisted that she read the book she gave her to read before reading the Harry Potter book. She read it on the bus on her way home and gave it back to her teacher the next day. She grew up surrounded by books, was a member of the local library from three, and her reading abilities was ahead of her peers, the book the teacher insisted she read was insulting to her. 

    I have listened to children reading in schools, and was very impressed with one young student. The piece he read was to do with height of canal travel and talked about cobblestones, horse pulled long boats, canal locks and moving goods about. While his reading was good his comprehension on what he was reading was very poor. He had no idea what cobble stones were, what a canal was let alone why they should need locks. How can you enjoy what you are reading if you have nothing to put it into context? It reminded me of when I was a child, I was a competent enough reader but did not particularly enjoy reading until I was around 13 and a teacher gave a copy of one of John Wyndham's books to read. I loved the book and my love for reading began.  Hopefully the school will realise that there is an anomoly with his reading grade as it is one of the cornerstones for learning and it sounds as if he will do well in subjects where reading and comprehension is important.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • loobyloutouloobyloutou Posts: 2Member Listener
    My son has aspergers and all these stories sound exactly like my son to the tee. He's doing he's masters in physics but actually he wants a job with trains!
    Perhaps I gave him the love of trains I'm not sure. 
    It's nice to meet you all my son is22 
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