Son just diagnosed as ASD, please can anyone help

[dazzlemewithdiamonds]

Please go easy on me, have never posted before, but now I could really do with some help. My 25 month old son was finally diagnosed with ASD a few days ago, and not only I am going through a grieving process and existing in a state of shock, but I'm in a panic as to what help would be best for him. We have to wait several weeks before we get feedback from the assessment team and details of NHS help, but they have implied he will only be given a few sessions of speech therapy and a few portage sessions before we're left to our own devices until he's 3 and can go to a special nursery (if we're lucky). Although at the moment he is a v easy child, whose only issues are communication difficulties, I am so scared that without guidance on how to help him he might regress, or just that we might be wasting time that really could have made a difference. As I said I'm still shellshocked, and am overwhelmed by all the information I've come across on the internet, so would be so incredibly grateful if anyone could point me in the right direction. Otherwise I fear I might drive myself mad with the terror of letting my little boy down. Thanks so much

Ds1 is on the spectrum (as am I ) and we have seen fantastic progress in the three years since he was diagnosed (he was two years and nine months when we got confirmation). He is still markedly different from a typical five year old and still has significant difficulties, but he has gone from a lad who couldn't understand something like "get your shoes", who had a lot of physical speech but no communicative speech and apart from using hands as a tool (which he still likes to do) very little non verbal communication. I will disagree with the idea that you need understanding of speech to have speech therapy, what a SALT can do in the early stages, or what you can do, is help them learn the idea of communication and understanding vis other means. This might be something like rolling a ball between you, or blowing bubbles and getting the child to communicate in their own way that they want you to continue, or sounding out their name on an instrument and stopping halfway through after several turns. Eg "Frederica Bloggs, Frederica Bloggs, Frederica ..." You could try using sign language like Makaton or using PECS or other visual clues to help encourage their understanding. These are all things you can do at home, though PECS I think needs training, so formal SALT sessions aren't essential with them.

oh Dazzle........ Remember, you are the expert on your child. You were before this diagnosis and you are today. You will take charge of this situation and this asd label. But it may take time for you to find your feet.

Keep talking to us. Your little boy loves you. He will be a blend of joy and frustration to you just like every other child in the world.

The therapy you eventually choose must suit not only your son but you too. I simply cannot bear texts whose authors casually throw in depressing scenarios like the one you've mentioned. It's not their fault - it's my personality - you may find that book more useful to re-read at a later date when the anecdotes don't have so much power. This is why I love the publications by the Hanen Foundation even more than I love Barack Obama (but that's another story).

dazzle, I'm so sorry, especially as the book that upset you was one I'd actually recommended! I think I was reading it without a dx for ds so it possibly wasn't as real to me as it was to you. I should have thought more about that before I recommended it. Put it aside and don't look at it again until you feel stronger. (The Julia Moore one was a lot more uplifting, I should have stuck to that one.)

I do remember a time last year when I wondered if ds was having a massive regression, whether he'd be able to make eye contact again, or ever speak to us properly. I vividly remember the panic and despair, trying to read everything I could get my hands on, and also trying to stop my mind racing years into the future. I realised that I had to take it all one day at a time. I still don't allow myself to think more than a few months ahead as I find it overwhelming.

One thing which really helped me was writing detailed notes before each paediatrician appointment (every 3 months). I recorded things like the number of words ds had, described typical interactions etc. It really helped me as I was so involved I didn't notice his progress on a day to day basis - when I read my notes back I can see it's been immense.

It was also comforting for me to think of the many adults I know with ASD - our neighbour is in his late 70's, has been married 50 years, has children and has had a successful career. Other than the slightest oddities in conversation, and poor eye contact, you would never suspect he is on the spectrum, yet his wife is convinced he has Asperger's. He is one of the kindest, most genuine people I know. There must be many similar people out there who have functioned in society without any help at all - you have got your son help from the earliest possible opportunity so you're already giving him a great advantage.

Keep posting, we are all here for you!

It really is difficult to believe how much progress some of us can make. Even up to my early 20s I was unable to cope with the simplest of unexpected events or social conversations outside of talking to very familiar people on very familiar hobbies and interests. I think most children develop over 10-12 years, and we can take 20-50 years to do the same (in social terms). Lots of us get there, honest. Well, most of the way there.... NT communication methods are always going to be a mystery since we can't see or do the body language stuff.

Hi Dazzle,

A few things to remember (and really cling to) whenever you are searching for your crystal ball are:

ASD means a triad of imparement NOT an inability to learn, although some children may have other co-existing dx that affects this ability, many don't.

This means that even though NT social & communication methods are not their preferred methods they can be taught and LEARNED. Learned behaviour may not be completely natural but can become easier with practice over the years.

ASD is a spectrum, like a rainbow. You may find similar children on the spectrum but never exactly the same, if only for how they respond to therapy due to personality.

Therefore any, well meaning, experts who write these books can only write from their own experience and will often use the examples that really stuck in their minds. Milder or mid spectrum ASD children are often not noteworthy in these books.

Yes, you need to read up on ASD but more importantly you need to remember that your DC is an individual and the same loveable personality is stil there.

And I haven't yet met any sibling that gives up. Mine really enjoy each others company and genuinely love each other unconditionally. There really is no reason for you to expect anything else for yours.

I wholely agree with other posters here. You and your DH were the experts on your DS before the DX, you are the experts now and you will always be.

It's like climbing a mountain when you've never walked up a hill before. Seems impossible when you stand back and look at it yet one foot always follows the other anyhow.

I haven't read the book you mention but it does sound like a worst case scenario. My HFA brother has very severe social impairments but is intellectually fine and has a happy life with family and employment - as a computer programmer, not at a very high level because he's definitely not Einstein but he likes it. My ASD son 4.10 has come on enormously since diagnosis at 3.6 and although he can't talk like an NT child, he can talk and make his wishes known. The worst might happen but then an NT child might get meningitis and lose some abilitites. There's no point in worrying about the worst case now. Find out what works for you - It might be PECs or Hanen or a combination but make sure any SALT you see knows that you want to start work soon. I have found that the parent has to do all the work as SALT time is so limited so it really has to be something you think is right - but it might take you a few months to realise what is right for your child.

cyber: I agree about the SALT.

In the early days ours barely had time to assess DS and give us some exercise sheets nevermind explaining the why or how to us.

BUT we stuck with her and she continued once our DS had started school. This is when it all began to make sense & the teaching assistant (we really love this woman) took up much of the slack. The SALT has been there from the beginning and never gave up on our DS. She still helps co-ordinate all services and attends meetings. SALTS are worth their weight really.

Suggest you make sure your SALT knows you, make sure you call them even between appointments and that eventually they get the message that you really do want them involved.

Definitely the SALT of the earth ! I agree finding the right person to help your child is crucial and don't give up easily or judge too much on first impressions. We didn't find an interested SALT but we do get amazing support at our local hospital which gives 1-1 therapy to ASD children. It has been a life changing experience for us and his language has come on leaps and bounds since he started there and we hope to keep the relationship going as long as we possibly can.

Don't be too quick to judge the schools either. Mine goes to a mainstream school, but we were really lucky in that the Headteacher was very approachable and this made it easier to be more direct with her, which also made it easier to get the other resources and help from other professionals too. (Sorry rambling on)...

What I meant to say was just try and be honest, open and direct with these people. Martyrs never won awards in life.

I've also seen mothers scream the place down demanding help - They sometimes got what they wanted on that occassion but we avoided like the plague from then on.

Dazzle - if you want to chat on the phone, can you tick the "yes I will receive emails from other mumsnetters" box on the chat area? I tried to send you an email with my phone number but think you must have not ticked that box. No pressure though, I will totally understand if you need to digest all the info before someone starts rabbiting in your ear. For what it's worth, those factual books fail to mention the joy and love that your autistic DS will bring you - they also fail to mention all the good things about autism (no ego, no envy, no spite, none of the worse so-called "social" attributes of a nf child). I couldn't love my son any more if he was nf, and my DH now says that if he had a magic wand that took autism away, he wouldn't use it - as our son is so totally himself and without his autism he wouldn't be the boy we love so completely.

And totally unable to tell a lie! (Always know who to ask who broke the window!)

Sickof, would still like that chat, thanks v much. Have now ticked the right box (told you I was new to this!) so hopefully we should be able to get in touch.

Once again, thanks for all your posts. I suppose at this raw stage all I really want to hear is that ds is going to live a near-normal life, anything else is too painful, but I still say the book I read was unnecessarily alarmist and negative. As I said, the bit about an NT sibling just giving up broke my heart in an instant! Thanks Tallulah for making me feel a lot better about that issue, and for reminding me that he's still the same child he's always been and for all his quirks he's been a wonderful addition to our family so far. Think I may give the books a rest for a few days and concentrate on the boy I see in front of me!

Just interested in amber's point about taking longer to develop socially.

Amber, do you think this is generally true of ASD people? As a biological difference? I'd assumed for my brother (undiagnosed suspected mild ASD) that it was more a question of the options being more varied after the early twenties. In your youth, everyone is obsessed with their social relationships and establishing their place in the pecking order, but you can "opt out" of that more as you get further into adulthood.