Advice please... mum of a 3 year old currently going through the process of being diagnosed with Autism.

Hi, 

I'm a mum of a beautiful three year old boy who was referred for some extra support at 2 and a half years old due to poor speech and language. He has so many autistic traits but at the same time he doesn't tick all of the boxes. He loves loud noises, bright lights, lots of very stimulative activities where he is always moving and running about. He is very picky when it comes to food and textures and will not touch anything remotely slimy. He has his favorite toys, currently Woody and Buzz, and finds sharing and turn taking distressing to the point he will smack and hit himself in the face. He says a few words but nothing in context and its very repetitive and said exactly the same way each time. 

My son is now three and although he is incredibly intelligent and so loving, he really does lack the skills and development that is expected of him at his age. We are still waiting on an official diagnosis but it is becoming more and more likely that this is the route we are going down. We're yet to get some decent Speech and Language support for him, its all very stop start, and we've yet to see a pediatrician. I currently feeling like Im head butting a brick wall. 

Just looking for some tips on coping with a toddler with autism and finding ways of actually coming to terms with this as parents. Myself and my husband are so open minded and accepting, but our families are struggling to understand that our little boy has additional needs, we're constantly getting the 'leave him alone he is only a baby', which is soul destroying when all we want is support. Is it normal to find it so difficult to accept? 

I am really lucky that I have a best friend who's son is 9 and has autism and have experienced so much with her, however it is so different when it is your own child. She is so supportive and really offers so much help. but I just feel like I cant say how hard I am finding it because she seems to cope so well. 

Its a daily struggle coping with the judgement of everyone else and I feel so alone! 

Are there any other parents out there who feel the same? Does it get easier?! 

Thanks 

D :) 

  • Hi,

    you are definitely not alone, but it does get easier. My daughter was put for extra support at 2 1/2years because of her speech and language delay , and as you said help was very stop and start. She couldn't deal with groups of people, and always seemed alone in social places. She too was a fussy eater, and ticked many boxes in regard to possible autistic traits, but on the other hand wasn't bothered too much of loud noises etc. She became very aggressive , and would obsess over things. She was referred to the umbrella pathway at 5 1/2 years old, and after 2 1/2 years, she has just been diagnosed with ASD.

    This came as a shock as I knew she had traits, but didn't think she would receive a diagnosis and I found this hard to accept at first.. But this diagnosis was a blessing, it wasn't a label ,but it gave us a key to open doors to access help that otherwise would be inaccessible. 

    The process can be very long, but at one point I felt so alone and overwhelmed I approached the local healthcare trust who signposted me to a home school link worker, who then enrolled me onto this triple p stepping stones classes, which helped greatly. It enabled me to get the violent outbursts under control, and to understand my child , but more interestingly it changed my expectations from my child as they were unrealistic, and her frustration has to a degree gone.

    I know you can access these courses online, but also through children centre, health visitors etc. It's definitely worth a look. One thing I would of done differently though, is use the tools they offer. The speech and language team gave us visual timetables , and social stories to use whilst we were under referral but I didn't as I didn't want to encourage this reliance, but it was the worst thing I did as now we've implemented them- transitions are easier and my child is more happy and less anxious. I can actually go food shopping with her, and take her to the dentist or doctor.

    Social stories are a brilliant tool if used properly.

     As for being judged by others ignore it, no one is perfect. Family members can be the worst, its easier said than done.

    I hope you don't feel alone. and this helps. It does get easier :)

  • Hi DanMammy,

    I am sorry to hear that you are struggling to cope.  If you would like to access more information and advice, the following services may be of interest:

    The NAS parent-to-parent service which is is a UK-wide confidential telephone service providing emotional support to parents and carers of children or adults with autism.  You can find out more about the service here: http://www.autism.org.uk/services/helplines/parent-to-parent.aspx.

    Alternatively you might like to contact our Autism Helpline on 0808 800 4104 (Mon-Thurs 10am-4pm, Fri 9am-3pm).  Again there are more details about the Helpline here: http://www.autism.org.uk/services/helplines/main.aspx.

    Take care,

    Kerri-Mod

  • Hi my son has just been diagnosed aged 3 and half the whole process started when he turned two. From listening to others we have been very lucky it was picked up so soon and diagnosed quite quickly. My son is very similar to your son by the sounds of it but he is also about a year behind in learning and development.

    My son didn't tick all the boxes either. He was delayed in speech and language, learning and understanding and after hearing tests and eyesight checks,  eventually went for a speech and language assessment. This was after the initial Paediatrician assessment. We were told by the Paediatrician that there was a two year waiting list for speech and language therapy (depends where you live) but received appointment a couple of weeks later for assessment.  They said that his language was unique and didn't know whether to give speech therapy as I think they thought his speech was more quirky due to his understanding and learning rather than ability to say words and simple sentences. So then she said well speech and language will assess him again at the multidiscipline team assessment and take it from there.

    So we went for the MDT assessment there was speech and language, occupational therapy and psychology team. We  and his preschool were sent questionnaires to fill in and from them and all the assessments they gave him a score not sure what it was out of but we were told a month later at a parent meeting that they have diagnosed him. We are now waiting for lots of support workshops. Everything is a bit up in the air and a bit confusing. 

    Finding out was a shock. But initially I was the one who was saying I think he has autism everyone around me was saying I was wrong and I think that they were in denial. But he recently Started making a lot of progress with speech and preschool pretty much turned around and said he isn't autistic. So I came around to everyone else's way of thinking to then be told he is... Nothing can prepare you for that day even if you do think they are autistic. It was a shock but also a Hugh relief that I was right that I'm not making these things up, I'm not imagining these things happening. 

    After the diagnosis my dad who previously commented that I didn't know how to control my kids, changed. The person who was telling me there was no way he was autistic suddenly said well we all knew he was different and that he needs help in a few areas. I think my family after diagnosis became more open to helping and to the fact he isn't just being naughty and it isn't the fact he hates you that he acts up everytime he comes round. 

    I used to be an autistic teaching assistant with in a secondary school and so did my husband so for us it didn't take much time to come to terms with the diagnosis I think it took longer for the people around us. People may start making a big fuss over every little thing he does and say well that isn't autistic. 

    The thing I'm struggling with at the mo is the general publics response to his challenging behaviour. I struggle with the looks, the snide comments, the people who offer advice and have no idea. I struggle with the fact that I feel I need to explain and tell the world about my sons disability in order for him and us to be accepted. So no your not alone and I really hope it does get better. 

    But diagnosis is only the beginning and I think I thought once he is diagnosed everything would be put in place and be accessible and we would get support. I feel at the moment we are left waiting for support and guidance and the paediatricians way of trying to sweeten the deal is to tell us more able DLA than our sons diagnosis and needs. 

    I'm writing this after a horrible half term week and some horrible comments made by others at a zoo we visited so if it sounds a bit negative I'm sorry. I'm under no illusion we will have to fight hard for our son for the rest of his life but I hope the strategies and support will help.