Hi. I'm new, parent to child with probable ASD

[serendippity]

Hi. I'm 29, and mum to five boys. My youngest (30 months) had an assessment a fortnight ago and I was told that whilst it's too early for a definite diagnosis, he is severely delayed and showing behaviours which would point to him having ASD. Oh, and ADHD as well.

 

I feel slightly shellshocked. I was expecting to be told that he was very busy- I knew that, but I never for a minute suspected ASD. Not even when his playgroup and other professionals expressed concern about his lack of eye contact, or the fact that he lines things up constantly. He is the most loving of all my children... I keep thinking they must have got it wrong.

 

Anyway, I'd really like to talk to other people who've been through similar. They have arranged some pretty intensive interventions (speech therapy, o/t, physio, and a place at a playgroup for children with special needs) but I can't help feeling pretty lost right now.

[Mandapanda]

Hi. I'm 29, and mum to five boys. My youngest (30 months) had an assessment a fortnight ago and I was told that whilst it's too early for a definite diagnosis, he is severely delayed and showing behaviours which would point to him having ASD. Oh, and ADHD as well.

 

I feel slightly shellshocked. I was expecting to be told that he was very busy- I knew that, but I never for a minute suspected ASD. Not even when his playgroup and other professionals expressed concern about his lack of eye contact, or the fact that he lines things up constantly. He is the most loving of all my children... I keep thinking they must have got it wrong.

 

Anyway, I'd really like to talk to other people who've been through similar. They have arranged some pretty intensive interventions (speech therapy, o/t, physio, and a place at a playgroup for children with special needs) but I can't help feeling pretty lost right now.

 

Hi serendippity

 

It is a shock when you get a diagnosis, even if you're expecting it, but especially if it is out of the blue like this.

 

My eldest was not diagnosed until he was 7 years old. He had always been different, but I thought that was how all children were and I just worked harder! By the time we got a diagnosis, I had found out about Asperger's and was certain it was that, but all sorts of things went through my mind when it was confirmed.

 

I would suggest you read anything by Tony Attwood. He is a professional who actually seems to love people with asds and emphasises the positives. It really is not all bad. Obviously it depends where they are on the spectrum as to how difficult aspects of life may be, but I do believe that they can all grow up and learn and improve to some extent, they are not stuck how they are.

 

Your son is very young. You may find that at different stages in his life he will seem to 'catch up' with others, but then 'lag behind' at other times.

 

As you are being offered help and support, GRAB IT! We have had very little help. The people helping will soon say if they are doing something that actually is not necessary in your son's case, so you have nothing to lose by accepting that help. Also getting more support and help could give him a wonderful start and make all the difference to his progress in education in the future.

 

My eldest son is a lovely happy teenager (definitely not normal!!), and although he has had almost no support, no statement, no learning support assistant, never went to a special school, he has not only survived but thrived. He is now at sixth form college and loving it. Yes we've had our very hard times and I have had to work very hard and stand up for him many times, but it is very rewarding and I am so proud of him (and ourselves). I found I could understand him well from a young age, I was sort of 'in tune' with him.

 

My youngest son is another matter, mainly due to his anxiety. He is a very different personality to the eldest. I am not sure what the future holds for him, he could not cope with secondary school and is not attending or doing any education at the moment, but he is safe and secure and knows he is loved (even though he finds that 'disgusting'), and we will do whatever we can to help and support him. Life is not always easy but it is certainly not boring!! When he was younger I really did not understand him, but I have learned a lot about him and the way he thinks in the last 2 years, and I understand much better what his needs and difficulties are now. Even though he has such major difficulties, we are finding it very difficult to get help for him (and us), so do make the most of the help offered now.

 

Give yourself chance to get over the shock, and welcome to our world! <'> <'> <'>

 

 

[concernedmummy]

Hi Serendippity,

I don't have an awful lot of advise for you but like you my ds is 30 months and we are going through a number of agencies to see what is going on with him, it is suspected that he is on the spectrum. I have some previous experience with AS as my stepson has it and I have learnt from some of the problems we had with him that many could have been prevented had he had input and help earlier on.

I am therefore determined that my ds gets whatever help he can to benefit him.

He has had speech therapy assesements which have put his speech and understanding at that of a 12-18 month old (bit of a shock for me as I really didn't hink he was so far behind).

I have portage coming with the ed psych tomorrow for their first visit, I have heard very good reports about Portage and hope they can help my son, and more to the point help me help him!!!

It is awful when someone tells you for the first time that they suspect there is a problem and I understand that you feel shellshocked!!

What I have found the most difficult is that it seems to take so long to get any real answers, but as many posts say on here diagnosis is a long and drawn out affair on the whole!!

My ds is lovely and I wouldn't be without him however he is, that is what you have to hold onto II think through all of this, as you said your ds is the most loving of your children.

Sending you lots of hugs:)

[serendippity]

Thankyou for the replies.

 

My little one is wonderful, he really is. Alright, so I'm biased, but everyone who knows him adores him. He's always happy, and has a really strong character. He's so funny

 

I think the hardest thing is that I want answers. I want them to tell me how severely he'll be affected. Whether he'll be able to lead a normal life. Things like that, y'know? Yet there's no answers. The fact that it's a spectrum is incredibly frustrating too... because there is so much difference along the spectrum it complicates things even more.

 

I don't care if he's not going to be the next Einstein. I just want him to be happy.

 

I've been reading as much as I can (will definitely look out for those books, thanks) and trying to get my head around it. Education seems a bit of a minefield. Apparently, the paediatrician wrote to the LEA to tell them he'll need additional support when he starts school. I'm not sure what that support will entail though.

[Tally]

Hello, and welcome to the forum.

 

Many people with ASD are very affectionate and enjoy the company of the people they know well. Your son being very loving does not rule out ASD.

 

Sometimes the symptoms of ADHD can disguise ASD. Poor eye contact and lining things up are classic symptoms of ASD, and it sounds like the professionals have identified other traits as well.

 

It sounds like you have a good medical team behind you, who are putting in place a range of interventions and supporting you in seeking appropriate support for your son in his education.

[serendippity]

Many people with ASD are very affectionate and enjoy the company of the people they know well. Your son being very loving does not rule out ASD.

 

Yes, I think it just goes to show how spectacularly uninformed I was to be honest. I had only the vaguest notion of ASD, which would probably apply to those at the more severe end of the spectrum.

 

I'm learning, now.

 

I wonder whether his 'symptoms' will become more pronounced as he gets older. Whether they're less noticeable now due to him being so young. It was only this morning whilst watching him play that I realised he doesn't *do* imaginative play. He gets his figures, puts them in the cars, lines them up... but he doesn't make them walk about, or drive the cars. I hadn't noticed.

[Tally]

I am an adult with Asperger's, so my viewpoint is probably a little different to your own.

 

It is likely his differences will become more evident as he gets older. He is likely to develop life-skills and maturity more slowly than his peers, and the gap may appear wider as he gets older. But he can continue to develop and learn throughout life, so the gap may narrow again into adulthood. This has certainly been the case for me!

[wishingwell]

Hi Senendippity <'>

You have made a good discovery in finding this forum I've been popping in and out of the site over many years and some of my best advice has came from other parents. Also my local library where able to order me lots of books on ASD and ADHD.

I can remember the turmoil of emotion when we were first told about ASD. I had expected the ADHD but the ASD blew me clean out of the water. I read everything hoping to find answers to all my questions. Along the journey my husband discovered he also has ASD. The early support is an excellent start. Please continue to asks many questions and never feel embarrassed about asking for help we have all been there.

[JsMum]

 

 

Hi and welcome, my son is on the higher functioning end of Autistic Spectrum and has several co morbids the one that effects him the most is high levels of Anxiety, even though J is on the higher end and he communicates he still has many difficulties understand complex communication and now he is 12 his symptoms are more prominant, he has ADHD which stood out more than anything else he has but I woud say that its a combination of all his difficulties that make it difficult to deal with but once you start reading up on the differing conditions you learn to understand the triggers, monitor their moods and reactions and over time it does in some ways become easier, it is never easy though, this forum has been very supportive in ensuring I got the right level of support for both me and my son, I attend the local parent support groups of parents who have children with Autism/ASDs and I also attend the parent groups of parents who have children with ADHD it is great to be with other parents who are facing similair dialemmas and been in contact with people who genuinally understand.

 

I have attended the HELP programmes with National Autistic Society and they have a brilliant website and further membership information, such as regular magazines and services.

 

It is very nice to hear you have support for your son and are getting the correct help early as this will really help him further down the line, my son has only just recently been DX with High Functioning Autism which I find very challenging and at times difficult to cope with.

 

My son is funny, cheecky and has an amazing charachter qualities that make him who he is, what ever there difficulties they some how still shine throw and what matters is he is given the best quality care and support.

 

Your in good hands here but it sounds you are in good hands from your service providers too.

 

JsMumxxxx

 

 

 

[Maria-Alex]

hello serendippity,

 

Sounds familiar to my son at that age. Some of his quirks were:

 

• No eye contact.
• Lines things up, cars, pencils even food.
• Mixing 6x Puzzles together and arranging them with no trouble.
• Very little speech, he would name makes of cars while walking through a car park (Ford, Volkswagen, BMW etc...) but not conversational speech.
• If we had any visitors he would hide under the kitchen table or run to his room until they leave.
• Would rock back and forth.
• Make strange grunting sounds.
• Wouldn't eat anything broken, like a biscuit or Kit-Kat chocolate.
• Any wet clothing would have to be changed asap.
• Didn't like dirty hands.
• +Lots more...

 

Before he was diagnosed I didn't know there was anything wrong with him, he is my first child so I knew no difference and didn't have much experience with babies/toddlers before Alex.

I know your feeling of shock, I didn't know what autism was and was never told too much about it until he was finally diagnosed and it is a shock to the system.

But the nursery, school, parent liaison and doctors have all been good and told me the info I need and things are okay, its hard but I am coping... sort of! We're learning how to adapt.

 

 

[serendippity]

hello serendippity,

 

Sounds familiar to my son at that age. Some of his quirks were:

 

• No eye contact.
• Lines things up, cars, pencils even food.
• Mixing 6x Puzzles together and arranging them with no trouble.
• Very little speech, he would name makes of cars while walking through a car park (Ford, Volkswagen, BMW etc...) but not conversational speech.
• If we had any visitors he would hide under the kitchen table or run to his room until they leave.
• Would rock back and forth.
• Make strange grunting sounds.
• Wouldn't eat anything broken, like a biscuit or Kit-Kat chocolate.
• Any wet clothing would have to be changed asap.
• Didn't like dirty hands.
• +Lots more...

 

Haha my little one hates broken chocolate bars too- he screams indignantly and throws them at me in disgust! In fact, quite a few of those sound familiar- I wonder sometimes where the difference is between symptoms and just their little quirks. I mean, we all have them, right? I can't sleep in bed linen washed in anything other than my usual fabric conditioner- but I don't have ASD

[Tally]

Autism is a syndrome, which means it is a collection of symptoms. This means that many people may carry some symptoms, which is why most people can relate to some aspects of autism. It can only be defined as a condition when enough symptoms all occur in the same person.