New Member, bit at a loss since diagnosis

Hi All

I'm new here and I'm a parent of a child who has recently been diagnosed with Autism.

i have been given quite a lot of information on groups and charities to contact and also a few books to read but i have to say I'm feeling more than a little lost with it all.

any help and advice would be welcome

Ian

  • Hello Ian

    I'm a new member too - my 14 year son just being diagnosed this week -  following this thread if you don't mind

    Jane

  • Hi there, welcome to the forum. I hope by using the whole of the NAS site. You will hopefully get some much needed guidance. The site covers various topics to say the least. You may find that once anyone (or a specifically a child) is diagnosed with autism I believe you are entitled to some benefit e.g. Disability Living Allowance (may have to check eligibility). There are various services around. I suppose it depends on many factors such as age, location as well as other components. You may notice that a child or young person on the autism spectrum likes their own personal space which is not unusual. Saying that, in regards to education typically a mainstream school would be a bit challenging. It might be worth seeking advice or support from your local authority. Having a one-to-one, or a small group might be useful but depends on many elements.

    Generally speaking, when addressing information to an autistic person. You may want take things slow one step at a time. As too much information can be uncomfortable as he or she will not be able to understand what has been said. Maintaining the right level of pace, pitch, volume is another component. Some work well with having cards with symbols or signs if desired. Whilst others may not require it. Some are more visual whilst some are auditory (verbal) it depends.

    Having that support whether from a professional or family member can make all the difference. It will take some adjustment but with a few changes ultimately things will improve. Sensitivity can appear in different areas e.g. sound, light, taste, touch, smell etc. Sound can be a problem for most autistic people depending on how loud it may be.

    It will take a lot of patience and skills to make things appear well not just for you but perhaps even the whole family. Autistic people are known for taking things literally so it might be useful to use short, simple and effective communication in which the person can understand whilst giving the child or young person a choice and time to respond and process information. Body language can appear misleading at times but for autistic people it can be difficult. Not just by body language but facial expressions, gestures, jokes, sarcasm, common phrases or sayings...

    Social communication, imagination and interaction as you know is never straightforward. It will take time to learn new skills on how to engage whilst with others but with the right care and support. Understanding the danger risks, coping in new or unfamiliar situations, rules. But, it is not impossible to try and improve those things. It is about finding that balance and educating he or she at a pace they can understand and hopefully adapt to.

    I hope this helps.

  • Yes, it's a lot to take in. That can take a while. I'm not a parent, but had my own diagnosis a couple of years ago in my 40s. Suddenly something that was 'other' is a lot closer at hand, not just being autistic but the wider idea of being disabled. It has explained a lot. And a lot of that I probably couldn't have got just from books because it's unique experience and behaviour that I'm now seeing through the new lens of 'neurodiversity'. Basically everyone is different, and autistic people doubly so, or more than doubly. So I'm learning not to make assumptions about what people can and cannot do.

    How old is your child, and how is their communication? I expect the usual Tony Attwood books should be helpful. The Naoki Higashida books (The Reason I Jump and its sequel) that have been translated by the novelist David Mitchell may be interesting. 'Naoki has autism of a type labelled severe and non-verbal' like Mitchell's son, and that's helped him understand autism as a sensory and communication difference rather than a lack of intelligence or emotional awareness which it's often painted as. I also found Neurotribes interesting at putting autism into historical context.

    I think most useful might be local groups, both NAS groups, and general groups of concerned parents and carers that get involved in campaigns to secure services. There are probably a lot of people living near you who've had similar experiences.

    If you have any specific questions, feel free to start a new thread, and you may get answers from parents and autistic adults.  Good luck.

  • Are there any particular areas or things that you feel you'd like more information about? Or difficulties that you are facing with your child, perhaps those that led to seeking a diagnosis? It's a little difficult to give help or advice without knowing what the specific problem is really. Autism is such a wide spectrum and even two people on the same point on the spectrum will face different challenges and be affected in different ways.  

  • Hi All

    many thanks for the replies i was away last week o this is the first time ive had to get online and reply properly.

    i went away with my wife son and daughter. my daughter has been diagnosed as being on the autistic spectrum. i have to say the holiday went well as with my daughter we had to change the way in which we talk to her and respond to her and patience is definitely the key.

    she sometimes stammers when talking to you and as i usually know what she intends to say i will finish her sentence for her which i now don't do and let her finish it herself. also being more patient with her in general and allow any fixations or OCD instances to run their course. she did seem a lot happier also even though she may not have noticed the change in me and my wife.

    my wife is not my daughters mother as we separated some time ago. so with that in mind the subject of autism came up in conversation between my daughter and her mom. she didn't really react only to say that she didn't want to have autism but was explained to her that she had a special brain rather than described as an illness. i have yet to speak with her since this conversation but am eager to see if she mentions this to me so i can hopefully help to alleviate any concerns she has.

    ian