New to autism and learning

I wonder what causes a child to regress at 18 months? I heard it is quite common. I did. My mother said I was making grammatically correct sentences then at 18 months I stopped talking. 

I actually do remember a little but not that this regression was a concern. I did feel under pressure to grow up, I do remember that. It was decided the birth of a sibling must have been behind it too, as this was the 60's. There was a belief at the time you can have missed steps of development. 

Hi Skye,

This may be a bit late in coming but I hope it will give you some encouragement.  Our boy was diagnosed at 3yrs old and he did many of the things which you describe your daughter as doing (eye thing, flapping, spinning etc).  Our lives were a misery, not having any control over our child, being stuck in the house unable to go into our own garden, unable to dress him, wash him, play with him. Meal times were hell. He didn't speak, just screamed at us, and the few words he had at 18months were gone. I cannot believe how bad things were when I look back. We were all at breaking point. 18 months on, and he is completely different. He still has issues but the progess he has made is so encouraging. He can now speak to us and although alot of it is wrong or just ramblings, he makes progress everyday and we are getting to understand him more and more.  His behavior is still a bit odd, but daily activities (eating, washing dressing playing etc) are all achievable now, without too much fuss. We are able to say "NO" and he understands when he has done something wrong.  He has a sense of humour and is actually fun to be with. All this in 18 months. He has had a good deal of intervention (therapies and groups) and maybe some of his progress is simply maturity.  I did want to try casein/gluten free but his pediatrician said not to bother.  However, he seemed to be getting quite chunky so I reduced his milk intake as he would have it for drinks thoughout the day. He really only has milk in his breakfast cereal and yoghurts/cheese now. Whether this also has effected his behaviour too, who can say. Good luck with your little girl. When I read what you wrote I recognised those feelings of desperation and confusion.  Hang in there.  You have to for your little girls sake. Best wishes.

Hi again

Skye, you have some fantastic resources there to help your daughter - her older brother and sister!!

Jack has an older brother (he's 14) and he plays with Jack and 'play fights' daily - Jack, who was totally bewildered by it all now looks forward to seeing Ryan when he comes home from school and giggles at being put in a 'headlock' and tickled - he's also started to 'fight' back which is brilliant to watch - as you can imagine.

I'm constantly researching different aspects of autism and find it all totally fascinating - it helps if you have someone, in the same boat to discuss issues with of course - and not necessarily a partner or family - another parent who understands exactly what you're going through. Have you joined any support groups in your area? Your Portage Worked should be a fab source of info for help and support for you all. Home visits are great - we had those too and they were SO valuable to us.

Sue x

aww thanks huni thats really helpful thank you xxxx

Hello Skye1971

I'm just adding a link to a booklet called "After diagnosis" which you, or interested others reading this, might find helpful:

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/after-diagnosis.aspx

It gives you a bit of information about where you might be able to get advice and support, and also on the types of benefit you might be entitled to.

Best wishes.

Sandra - mod

aww thanks sue for your kind words were waiting now for a portage worker for her she is going to be coming to the house and your right we do put a lot of pressure on ourselves i mean i have done nothing but do research on autism and i,m still confused autism is so hard to understand and all we want to do is help her and we dont know how it breaks my heart we love her so much she,s our special little girl she also has an older sister and brother aswell xxxx

Hi Skye

Our little boy is 4 and was diagnosed with ASD at age 3 - though we noticed at around 18 months old that he was progressing differently compared to his older brother when he was that age.

Jack didn't make much eye contact and he 'flapped' his arms a lot and rocked when sat on of the sofa. He lost the words that he had learnt to say and would 'disappear' into his own little world.

Once we had flagged up and requested an assessment - the ball rolled so fast we struggled to keep up!! We are so grateful for the early intervention we have received and still are receiving.

I found myself doing an awful lot of research just to make sense of Jack's world and to help us to help him.

We feel we're quite a way down the road now - even at the tender age of 4 years - Jack is learning to speak , he goes to a mainstream nursery school and has one to one care whilst there. He now has a full educational statement in place for nursery and for when he starts mainstream nursery in September.

We worried about his eating habits and behaviour at the table - but chose not to make a big fuss about it - it paid off - he now feeds himself with a fork or spoon and sits with us for all family meals everyday. We have also successfully taken him for meals in restaurants - something we would never have dreamed possible even a year ago! I researched diets and autism and chose to try a gluten and casein free diet for Jack - it has changed him dramatically. I consulted a dietician as I started the diet and she was all in favour as Jack began eating loads of foodstuffs he wouldn't look at before. We are SO proud of him.

It's a challenge but has fantastic rewards. I think some of our 'heartbreak' is the pressure we put on ourselves to be 'perfect parents' and I guess a little sense that we must have done something wrong - which we should know by now is absolutely NOT the case at all.

One of the best things I did for myself and Jack was to remove ourselves from the 'competition' of playgroups, mums and tots etc. We were lucky to have a place at a Portage playgroup and that was just amazing - Jack learnt to sit with other children and take his turn - a skill I couldn't teach him at home.

Your instincts are the best ones for your little girl - the fight (and there'll be plenty) is worth it.

Keep smiling

Sue x 

thank you patiens for your reply and your kind words and your right it hurts so much when all we want to do is hold her and hug her and also your right when you say we know our children best i just hope that as they have found this so early on that it might help her come on better xxxxx

Hello Skye.

I'm relatively new here and I don't have an autistic spectrum disorder, and nor does anyone in my family.  I work with ASD children, if I may refer to them that way, in an ASD unit in a High School, which means I've met quite a few and at varying levels.

I was for about five years father to a massively handicapped little girl - nothing to do with autism - who passed away about 20 years ago, and so I know a little more than some of my peers about what it feels like when we discover that our children are not quite what - in the ignorance of our earlier daydreams - we imagined they were going to be.  The light of my life for all of her life, nobody could tell us at first - she 'crashed' at seven days old - what was wrong with her, and even as her problems started to be 'mapped', no-one seemed to be able to tell us how she would be affected.  We learned, of course, as it happened and from the things she did and did not do.  I know, too, of the impact such a situation can have on a family.

On the one hand, despite your easily understandable wish to know, it seems to me that 2.5 years is maybe a bit young to come to too fixed a perspective.  All children are different and all children change, and it can be very, very difficult to anticipate how they will change.

I haven't looked widely around this site but I think there is a lot of information on the NAS site generally and you'll find a lot of generous people here who will offer advice when you seek it.

Have confidence in yourself.  You know your own child best.  Parents do.  Don't let anyone bully you into believing otherwise, because there is no doctorate or degree that is equivalent to the connection which exists - in most natural circumstances - between a parent and a child.  Forgive yourself, too, when you don't feel you are doing everything right and don't get to the point of thinking "others seem to manage better, why can't I?"  You are probably managing just as well, if not better than they are, but in social circumstances people tend to hide just how badly they are struggling.

Nothing I say can soften the hurt of not being able to give and receive meaningful hugs from a child.  That could change, over time.  An unbeliever, I cannot meaningfully pray, but I hope with all my heart that that change does occur for you and as soon as possible.

Warmest best wishes to you,

hi thanks for your reply it was a big help i now know she is severe which is what i thought she doesnt speak at all she used to say only 4 or 5 words then stopped now she says nothing she also spins round with her eyes to the side of her head she always does funny things with her eyes thats the only way i can put it she also flaps her arms twists her hands walks on her toes grinds her teeth she is now becoming agrressive aswell now she like likes biting people and hitting people and hits herself also and bangs her head on things she also licks everything in sight from the settee to desks everything she comes in contact with she also trys to eat buttons and strange things and the list goes on its totally heartbreaking she wont interact she doesnt give eye contact she doesnt like to be hugged its so upsetting and takes a lot to learn all about it

skye xxx

Severe Autism is when people have significant issues communicating, being sociable or developing in general, some will take longer to learn things, others may not speak for years, it varies amoung individuals.

My younger cousin also has ASD, but where I'm higher functioning (Aspergers) he is classed as lower down on the spectrum. He will sometimes say things repeatedly, he has no concept of personal space, his speech is significantly different (he sounds almost like Steven Hawkins) but he excels in maths and strategy games. He only got diagnosed a few years ago though, I think he was ten or eleven at the time.

Next time you meet a proffessional you could ask them where abouts on the spectrum they think your daughter should be, and may I ask what sort of things your daughter does that they feel led to the diagnosis?