Hi, my son was diagnosed last week with the above. He is 3.5 and due to start school next September. Although I've been fighting for this, still feel really sad about it, especially as he has come on so much in the last 6 months! It's a lot to get your head around, felt as if I was told, given a leaflet and shown the door. Wondered if anyone else has had the same diagnosis and how it affected them, their child and especially mainstream school life...thanks for reading, any support would be greatly appreciated :)
Hi NAS36414, I’m not in your situation, so just offering some moral support really. It’s natural for you to experience a range of emotions, at this diagnosis, and I think it’s imoortant to allow yourself to feel them, without judgement. The diagnosis doesn’t change who your son is and he will keep on growing and developing and making you more proud of him than you could ever imagine. There are so many positive aspects to autism that are often overlooked by the professionals, but despite the challenges, they are there. And your son is one lucky boy to have a parent who is able to suppprt him. Local support groups for parents of children with autism can also be of significant value. My Support Group is mixed, it has adults with autism and parents of children with autism and we all share our experiences with each other, which is so valuable. Mainstream school can be challenging in many ways but an early diagnosis is valuable and can really help you both through any challenges you come up against. Well done for fighting for the diagnosis. I fought for mine and wasn’t expecting to feel so sad about it once I got it. I see that as part of the grieving process of the loss of expectations etc that I suppose I had for a certain kind of life. I allowed myself to express my grief etc and now I’m able to focus more on what I can do about it. I accept it but had to go through a bit of a roller coaster of emotions to get to that point. Most if not all parents and probably adults, go through a range of emotions. It is a lot to get your head around. Try not to get overwhelmed, and remember how well your son has been doing these last 6 months and how he will continue to do so.
Please don't worry about the fact your son is autistic. Years ago, this would not have been recognised and he may have spent his life in ignorance. I am 63 and have been diagnosed only a year, and I have been wondering about what might have been if it had been recognised earlier, but one cannot spend time in the past.
To a large extent terms such as 'mild' or 'severe' like high and low functioning are a little bit meaningless. Your son is autistic, and this means his brain is wired 'differently' and not in an inferior way. He will think problems out in different ways, may get frustrated, wave his hands about and have what others see as tantrums. As time goes by, he will in all probability learn some ways of adapting his behaviour but that does not stop him from being autistic. Autistic people cover the whole range of intelligence just as neurotypical people do. Basically there is nothing to worry about!
He might get very fixated interests. I can bore people to death once I get started! He may cope very well in mainstream education, the main help he will probably need is for others to show understanding and awareness of his autism. And with televison programmes such as the Chris Packham programme and The A Word the awareness of autism is becoming greater.
Just because I am autistic doesn't mean I am incapable of working things out, of holding a conversation or of driving or using public transport, of doing the shopping or any other everyday things. I may be forgetful, talk too much, not eat what others think of as a normal diet and noI like parties but each to their own, and I am quite harmless.
I took great interest at school in reading, I very quickly picked it up and read books far beyond my years, although I have always had a problem with novels, preferring non-fiction and short stories. I used to read text books from cover to cover as bedtime reading. So I would say nurture his interests, you have a son of which you can be very proud of and there is no reason why he cannot lead a very fulfilling life.
Everyone has their strengths and weaknesses, and the strengths can be nurtured, the weaknesses worked on, but not forgetting that your son's brain will get to a stage where too much is going on at once and he may not be able to cope with some seemingly easy tasks but complex tasks he may find a breeze.
It seems to be something a lot of neurotypicals are proud of to say 'I can't spell' or 'I'm useless at adding up', and to some extent it didn't do them much harm over their life.
Well said Trainspotter and every word is true. An early diagnosis is such a gift, especially with parents who honour their child’s differences and work with the child to highlight their innate gifts. I think my grandson is on the spectrum, we get on so well and although the little girl is lovely and although the little boy has frequent little tantrums, he’s always happy and I feel so much joy and love, every time I see him. We get so excited when we see each other and when I picked him up from school the other day, he was shouting to the other kids, look, this is Neikka. He was so happy to see me. The little girl is so soft hearted and is effected by her surroundings, as most nt children are, but the little boy just takes life as it comes and is less effected by the outside world and he’s so funny. He’s such a joy and while most people don’t understand him, he’s so cute, he’d get away with murder. He’s doing ok at school and his differences don’t seem to be apparent to anybody else because they’re blinded by his cuteness. What I do see though, is people telling him not to cry and that he doesn’t have anything to cry about. I asked the other day how they knew that and was told to shut up. I grew up not trusting myself because I was told to stop crying as a child, so me and my grandson talk about it and even at 4 years old, he told me that he cries and carries on so that we’ll give in to him and give him what he wants. The adults around him are fostering his behaviour because they tell him off, tell him to stop crying and invariably they give in to him anyway. They won’t ever know when he is genuinely upset or how he’s feeling and they won’t help him to be able to express himself. His attention is quickly taken up by something else so he doesn’t seem adversely effected by the people around him but a little understanding and patience goes a long way. An early diagnosis is such a gift and you’ll learn so much from your son. My friend who has two children on the spectrum, one in mainstream school and one in a special school, despite the daily challenges, says that she is beyond blessed to have her children and with her loving support, the children are both thriving, despite their difficulties. The little girl who is in mainstream school finds life more difficult, as she is more aware of her differences, but she’s found a passion in singing which offsets her difficulties.
Thank you both so much for replying and your kind words. I'm really not sure why I am shocked by it all, as deep down I've known a long time. Guess it'll just take a bit of time to get my head around it and get back to being the mum who has been fighting a long time to get the help my gorgeous little man needs! Find it really saddening, that fight really is the optimum word...you fight for recognition and diagnosis, then you get left to resource all help yourself! I'm sure in time, I will do all I can to make sure this happens. 'Cute' I know exactly what you mean BlueRay, my boy melts my heart on a daily basis and I really hope it never changes. Thank you both again, your words have been more of a help than anything :)
I think your response is totally natural NAS35414 and I’m glad that you didn’t ignore it and push it away. Often, we can’t find any logical reason for why we feel a certain way but I’ve realised that no matter how we’re feeling, it’s important to honour the feelings anyway. If we resist them, they persist, and if we try to push them down, they will simply grow deep inside us. It is sad that we have to fight for our rights but I take comfort in the fact that we’re also paving the way to make things that little bit easier for others in some way. I know exactly what you mean when you say your little boy melts your heart on a daily basis. I honestly don’t think I’ve ever been so excited to see anyone as I am my grandson and he’s not even my ‘blood’ grandson, he’s my son’s girlfriend’s son, but I have never felt such joy for anyone before, just the thought of him brings me joy. I adore him and doubt that will ever change because it’s who they are. This will can be a cruel place at times but I sincerely believe that autistic people are here to change all that.
My friend with the two autistic children gets tremendous support and friendship from the other mums. I highly recommend joining a local support group. I also get so much from my group and love being around other autistic people. You’re doing a great job and you will continue to be highly rewarded with the joy and love that your little man brings to your life. It’s also ok to admit how difficult it is at times. I’m learning to accept this. I’m a very positive person by nature but I can now admit how difficult life can be at times and when the sadness washes over me, I allow myself to feel the emotions and they soon wash away as quickly as they came.
This is also a great place to air our feelings and fears etc. There’s strength in numbers and I believe that between us, we are making the world a better place.
Your little boy sounds adorable and long may it remain that way. There are also some good YouTube channels about autism that I find helpful.
It has taken my friend a while to get her head round it all and like all of us, she learns as she goes, that’s why I think it’s important that we all have a place we can share our experiences. I’m still getting my head around it all but knowing who I am has made me so much stronger. For the first time in my life I’m really standing up for myself and I’m proud of who I am. I’ve still got a long way to go in terms of creating my life on my terms, but I’m on that path now and nothing will deter me.
It’s been lovely to talk to you. You’re stronger than you think and that strength will get you through anything and your little man will ensure, that any difficulties you have, are bathed in love and joy, which definitely mitigates any difficulties. You’re doing a great job, make sure you also look after you. Give your little man a hug from me. X
Hi I’m awaiting refferal for my just 4 year old deal with lots of challenging behaviour would love to swap stories strategies ,tips and calming methods , I am new to finding out information etc thanks lucy
Hi NAS35414, I’m in a similar situation as you, although my son still hasn’t got a diagnosis. I worry about the future and especially school next September. It’s all very overwhelming.
Hi , my son (4 in January) was diagnosed recently and it has plunged me into deep depression (just starting to come out the other side..stopped weeping at the slightest wobble!) . I expected an influx of support and all this amazing therapy (like in USA) only to realise within a few weeks that this was not going to come unless I pay extortionate fees privately. I feel so aggrieved and angry for everyone with this condition and shocked/disgusted by the lack of support, where is the equality! I was told my son was on the 'spectrum' then discharged the same day, even gave me a letter "discharge letter'. It's a terrible ordeal. I am very lucky that his primary school have been amazing , without them I would be seriously ill now.
Can I also ask, the term 'mild autism', is this the same as 'on the autistic spectrum'? which is what I was told. I was told that all people on the pathway of DSM-5 and then diagnosed are now generically reported as 'on the spectrum', even the term aspergers being omitted. Its all very confusing.
When my son was 5 years old, they called us to school. My wife and I went there, the director, his kindergarten teacher, and somebody of the social services were there. They wanted to talk about my son. Oddly they didn't suggest any diagnoses, they just told us they were going to observe him. During that talk they told us also they were a bit annoyed because my son was always 5 to 10 minutes late. I told them that was my fault. I had a train to work, and bringing him in time meant I needed to sit 10 minutes longer waiting for my train. The teacher pleaded that if I would bring him earlier this would make her life easier. I told these people that if there were a law and my son would risk to be expelled, that would be a big motivator to bring him in time, but that her comfort did not outweigh my discomfort. I think that explained a lot. I'm sure they added the phrase 'runs in the family' to his file... Now he's 13, has a bit of a girlfriend, goes swimming and works his muscles. I tell him at least once a week that I'm proud of him, (that I'm happy to have him in my team), I changed jobs so I could drive my older daughter (15 now), and him to music lessons twice a week. But that meeting still sits in my memory with an 'impending doom' stamped on it...
Realising you're autistic, feels a lot like waking up in the Matrix, without Morpheus out there to scoop you up.